The paperwork never ends The Archives
August 16-31, 2000 Archive Index CHFpatients.com

Mike Joye's 8-16 reply to Walter K's 8-15      my viral to DCM experience
 
Billy Jo's 8-16 reply to Walter K's 8-15      viral DCM experiences & questions
 
Jon's 8-16 reply to Billy Jo's 8-16      a start on answers
 
Rosemary F's 8-16 reply to Jan S' 8-15      Celexa experience
 
Ben B's 8-16 reply to Jon's 8-16      DCM/CHF causes & more
 
Lydia Moore 8-16      recovering from flu questions & more
 
Jon's 8-16 reply to Lydia Moore's 8-16      recovering from flu & more
 
Rick M's 8-16 reply to Lydia Moore's 8-16      tip on avoiding colds & flu
 
Tim Brownie 8-16      preparing to die (Tim's words, not Jon's)
 
Don Hudson 8-17      seeking support for lung/heart disease combination
 
Jamie S 8-17      viruses, coping & more
 
Jan S 8-17      is CHF often alcohol or drug related?
 
Jon's 8-17 reply to Jan S' 8-17      CHF causes & statistics
 
Tom's 8-17 reply to Jon's 8-17      causation & consequences
 
Jon's 8-17 reply to Tom's 8-17      actions & consequences
 
David A 8-17      vacation, altitude experience & more
 
Phyllis A 8-17      merging message boards
 
Jon's 8-17 reply to Phyllis A's 8-17      I'm dodging this one still
 
Jon P 8-17      isn't transplant an option?
 
Jon's 8-17 reply to Jon P's 8-17      yes, but,...
 
Sandi's 8-17 reply to Tim's 8-16      we will be thinking of you
 
Ken L's 8-18 reply to Jon P's 8-17      can you expand that a bit? & more
 
Gus R's 8-18 reply to Jon P's 8-17      about that prognosis
 
Billie Jo's 8-18 reply to Jon P's 8-17      about that prognosis
 
John Len's 8-18 reply to David A's 8-17      disability perks
 
Karen 8-19      what is non-dilated, non-ischemic cardiomyopathy? & more
 
Ben B's 8-19 reply to Jon P's 8-17      doctors & diagnoses, prognoses
 
Joe S' 8-19 reply to Jon P's 8-17      lifestyles & diagnoses, prognoses
 
Steve 8-19      questions about echo, EF
 
Tom B 8-19      fluid restriction experience
 
Leland Yee 8-19      update on our cruise & more
 
Bill D's 8-19 reply to Karen's 8-19      possibilities, memory problems
 
David A's 8-19 reply to John Len's 8-18      thanks, fishing & more
 
Kenneth M 8-19      thank you
 
Pat Y 8-21      how are you doing with the Coreg, Jon?
 
Jon's 8-21 reply to Pat Y's 8-21      update
 
Tom B's 8-21 reply to Jon's 8-19      diuretic dose
 
Jon's 8-21 reply to Tom B's 8-21      water intake restrictions
 
Cheryl G 8-21      low blood pressure & CHF meds
 
Jon's 8-21 reply to Cheryl G's 8-21      one opinion on CHF meds doses
 
John Len's 8-21 reply to David A's 8-19      fishing
 
Jeanette's 8-22 reply to Cheryl's 8-21      low Coreg doses & low blood pressure
 
Dana J 8-22      how do I get a correct diagnosis? & more
 
Mary H 8-22      questions - cough, virus, shoulder blade stiffness
 
Jon 8-22      site update
 
Ruthie A 8-22      how do I keep my blood going at my desk all day?
 
Sharon J W 8-22      Maggie F got a heart!
 
Bobbye H's 8-22 reply to Leland Y's 8-19      traveling, especially ship cruises
 
Tonya Dean 8-22      does anyone else have peri-partum cardiomyopathy?
 
Barbara 8-22      memory and sleeping problems
 
Jamie S' 8-22 reply to Ruthie A's 8-22      coping with sitting for long periods
 
Ophelia's 8-22 reply to Bobbye H's 8-22      great tips for a cruise vacation
 
Ernest D's 8-22 reply to Cheryl's 8-21      lower Coreg dose experience
 
David A's 8-23 reply to Bobbye H's 8-22      travel questions
 
Tom B's 8-23 reply to Barbara's 8-22      sleep problems experience
 
Jean C's 8-23 reply to Mary H's 8-22      such pain could be warning sign
 
Ginger 8-23      body weight & meds, update, prayer request & more
 
Wendy Booz 8-23      insomnia questions
 
Lydia Moore 8-23      insomnia, prayer, coping
 
Tom S 8-23      Coreg may have slightly negative effect on me
 
Jeanette's 8-23 reply to Barbara's 8-22      insomnia
 
Frank S' 8-23 reply to Tom B's 8-23      insomnia
 
Wilma H 8-23      where can I get good CHF info?
 
Yvette W's 8-23 reply to Tonya Dean's 8-22      peripartum cardiomyopathy experience
 
John Len 8-23      angina and blood sugar question
 
Bobbye H's 8-24 reply to David A's 8-23      traveling with CHF tips
 
Helen Otis' 8-24 reply to Cheryl G's 8-21      low Coreg doses
 
John Len's 8-24 reply to Ruthie A's 8-22      traveling with CHF tips
 
Janet S 8-24      traveling with CHF questions
 
Brenda H 8-24      good news update, pregnancy question
 
Phred 8-24      nitro, question for the guys here
 
Tom B 8-24      better numbers, no more energy
 
Jon's 8-24 reply to Tom B's 8-24      better numbers, no more energy
 
Cathy 8-24      yawning and CHF
 
Thomas 8-24      having sex with CHF
 
Jon's 8-24 reply to Thomas' 8-24      having sex with CHF
 
Harry Beardsell 8-24      etanercept trial
 
Roman Garcia 8-25      seek gene therapy info
 
Kim Sebastian 8-25      update, can seem me in magazine
 
Tonya Dean 8-25      seek others in St. Louis, Missouri area
 
Sylvia E's 8-25 reply to Thomas' 8-24      sex with CHF
 
Dana J 8-25      Toprol (beta-blocker) dose question
 
Dan Parks 8-25      seek CHF doc in Jacksonville, Florida area
 
Lydia Moore 8-25      really tired, reducing Coreg - questions
 
Laurie A 8-25      questions - low BP & Vasotec - infusion therapy
 
Mike W's 8-26 reply to Dana J's 8-25      high drug doses
 
Donna Zak 8-26      watch blood sugar if taking Coreg & Aldactone
 
Jeanette 8-26      have questions about sleep studies
 
Brenda H 8-26      to Thomas, Tonya & Jon
 
Sharon P's 8-26 reply to Laurie A's 8-25      difficulty swallowing
 
Barb L S 8-26      to Brenda H & thanks & questions
 
Tom S 8-26      sex requires creativity
 
Jeff M 8-26      is there scholastic aid for diasbled people?
 
Jon 8-26      sorry to be so late
 
Jon's 8-26 reply to Lydia Moore's 8-25      infections can really drag us down
 
Jon's 8-26 reply to Barb L S' 8-26      EFs
 
Jon's 8-26 reply to Brenda's 8-26      Toprol
 
Jon 8-27      updates
 
Lydia Moore's 8-27 reply to Jon's 8-26      thanks, helps just to hear it sometimes
 
John Len's 8-27 reply to Jeanette's 8-26      apnea info, sleep studies
 
David A's 8-28 reply to Bobbye's 8-24      travel & CHF
 
Bobbye H's 8-28 reply to Jeff M's 8-26      scholastic aid for disabled people
 
Barb L S 8-28      to Lydia, Ruthie, Mary & more
 
Hedy K's 8-28 reply to David A's 8-28      travel, overseas medical care, insurance & more
 
Bobbye H's 8-28 reply to David A's 8-28      travel insurance
 
Jon 8-28      page update
 
Jeanette's 8-29 reply to John Len's 8-27      sleep studies
 
Jon's 8-29 reply to Jeanette's 8-29      if it were me,...
 
Barb L S' 8-29 reply to Mary H's 8-22      virsues & more
 
Cathy P 8-29      does anyone have problems with chronic yawning?
 
Jon's 8-29 reply to Cathy P's 8-29      look here
 
Jamie S' 8-29 reply to Cathy P's 8-29      yawning as meds side effect
 
Mary H's 8-29 reply to Barb L S' 8-29      update, viruses, maybe I need new doctor
 
Barb L S' 8-29 reply to Kim S' 8-25      coping, PPCM, & about yawning
 
Ernest D's 8-29 reply to Phred's 8-24      Bob Dole disease
 
Paul S 8-29      seek info on biventricular pacing
 
Jon 8-29      update, my Coreg dose
 
Ben B's 8-30 reply to Mary H's 8-29      coxsackie virus is common, rarely dangerous, & more
 
Krista's 8-20 reply to Paul S' 8-29      biventricular pacemakers
 
Barbara L's 8-30 reply to Barb L S' 8-26      questions about doctors, tests & more
 
Jeanette's 8-30 reply to Jon's 8-29      sleep study
 
Jon's 8-30 reply to Jeanette's 8-30      sleep study method seems artificial
 
Tom B's 8-30 reply to Jon's 8-29      making this site go like the EverReady bunny
 
Jon's 8-30 reply to Tom B's 8-30      ups, downs and open to suggestions
 
Mary H's 8-30 reply to Ben B's 8-30      coxsackie virus
 
Frank S' 8-30 reply to Jon's 8-30      making the site pay its own way
 
Jon's 8-30 reply to Frank S' 8-30      making the site pay its own way
 
Tom S' 8-30 reply to Jon's 8-30      making the site pay its own way
 
Jon's 8-30 reply to Tom S' 8-30      making the site pay its own way
 
Barbara L 8-30      does anyone else's breastbone protrude?
 
Madelyn J's 8-30 reply to Mary H's 8-29      upper body pain & CHF
 
John Len's 8-30 reply to Jeanette's 8-29      sleep study experience
 
Linda J 8-30      what a turn of events!
 
Jon's 8-30 reply to Linda J's 8-30      you're always welcome here
 
Barb L S 8-30      to Mary H, Ben B, Barbara L, & Jon


Mike Joye's August 16 reply to Walter K's August 15, 2000 - Hi Walter, I have no family history of heart problems, but in February of 1999 I had a virus of some sort that lasted for 3 days. I had a fever of 104.4° and was on Cipro and alternating Advil and Tylenol. The Cipro was a precaution in case of strep throat or some other infection. I had trouble breathing the first night but after a day or two, it seemed to be okay. That weekend was Superbowl weekend and I did nothing except rest. My left hand began to swell and I went to the doctor that Monday. Four weeks later I had carpal tunnel surgery and they did it to find out what made my hand swell. They found an anarobe bacteria in my hand and to this day I feel it caused my DCM.
     My cardiologist doesn't know if that was it but since I was okay before the virus and the bacteria in my hand, I feel it must have been. Four echos and a cath later, I have DCM and an ejection fraction of between 38-42%. I feel fine but I still sometimes wonder if the doctor missed my diagnosis. I went to the cardiologist on my own and can only thank the good Lord above for sending me there. I had MRIs, chest x-rays and EKGs ran before I went. My regular doctor and an ENT could not find the problem. I simply had a feeling that I should be checked out and called the cardiologist myself.
     Three days later was my appointment and I am so glad I went. Jon's explanation is so true but I wanted to share what happened to me. A virus, as my regular doctor tells me, can create havoc in your heart. God bless you and I hope this note finds you well. joye13@gateway.net


Billie Jo's August 16 reply to Walter K's August 15, 2000 - Hi Walter, I'm really confused on this one too, as my DCM/CHF was blamed on a virus as well. Now, seeing as my entire family had a big bad case of what appeared the flu right before I got sick, with them recovering and me going into CHF, it probably was to blame! Why did everyone else in my family get better but it attacked my heart? The doctors can't seem to answer this one and even with my family history, they say that I did not inherit it. I was even sent home from the ER at first with "bronchitus." They didn't bother to check for anything else, even though I told them of my family history. It just seems to be too big a coincidence being the fourth female on my mother's side to come down with the same thing to not have anything to do with it.
     Even if it was the virus that caused it, was I somehow preconditioned to be susceptible to it? How do I look out for the well being of my 2 girls and son if everyone says it's not an inherited thing? Family history has got to have something to do with it. Also if we got this virus to begin with, what happens if we get that virus again. Are we still at risk? Do we get a double whammy or have to constantly live in fear of germs and start living in a sterile bubble or something? My cardiologist has never said anything about getting a flu-shot, but would this protect us? kritterkrazy@yahoo.com


Jon's August 16 reply to Billie Jo's August 16, 2000 - Hi Billie Jo, Here's a start on your questions. First, I had a terrible case of the flu just before my heart crapped out but I am not convinced that was the cause of my DCM. Such things can be coincidence. We have to be careful not to assume that because timing is right that something is cause and effect. Life, the human body, and it's environment are complex waaay beyond our understanding and making assumptions can lead us down a wrong road pretty easily.
     Why didn't it clobber anyone else's heart in your family, even though you all had it? I dunno. No one does. However, it's an accepted fact that the same virus that makes 100 people sick with flu-like symptoms will clobber only one person's heart in that group. Just lucky, I guess. <g>
     Why do they not check for heart damage in the ER? Well, let's be honest on this one, guys. Why should they? If it sounds like bronchitis, looks like bronchitis, and everyone in town is having bronchitis due to a "bug" going around, wouldn't we assume it was bronchitis too? Doctors are people too and the current health care system simply does not allow echos, chest x-rays or any other test (that costs money) for everyone who has the flu to check for an enlarged heart; even the large group who has some family history of heart disease. A huge number of people have heart disease running in their family.
     Heredity/familial cardiomyopathy is a very big subject so I'm going to condense it to a ridiculous point here. Simply put, there may be 10 million ways in which a family is genetically predisposed to DCM. Until all 10 million genetic combinations/defects/abnormalities that cause this predisposition are mapped and understood; and until tests designed that are cheap and easy to give; and understand the results of, this is going to be a very grey area. We live in an age of quick explanations, although many are really just guesses, even though we accept them as true. We forget that our world and our own bodies are complex to such a degree that we may never understand them entirely; Never. You can find researchers studying familial cardiomyopathy on my Links page and in my downloadable Urls if you want to pursue this further. If you do, we'd love to hear what you find.
     Don't assume your children are at risk. After all, the rest of your family got that flu and they didn't get damaged hearts. Your children are part of that same family and may not have the same predisposition to this as you do. Not everything is inherited. Be aware that the risk is possible, but don't get all worked up over it. I would suggest pushing for heart tests like an echo once every few years for them, but beyond that, realistically there is nothing you can do anyway, except convince them to maintain a healthy lifestyle. That is still - and will remain - the best way to avoid serious heart problems.
     Getting the same virus again may or may not cause further problems with your heart, but the odds are that it will not hurt your heart any more. Your body now has a ready response against that virus in its arsenal and will kill the virus much faster the next time. Will another virus further damage your heart? I don't know. However, the odds are against it. That's not iron clad of course, but it's comforting to me.
     Will a flu shot help? Yes. It will prevent you from getting a common illness and that helps your body stay healthier and stronger. Will a flu shot prevent another virus from clobbering your heart? Maybe, maybe not (don't ya hate hearing that?! <g>). If the common flu strain that this particular shot protects against is one that might hammer your heart, it will. However, since a flu shot only protects against a few strains, it is only so much protection. This year they may give diluted flu shots due to reduced supplies of the vaccine. Testing of these dilutions are in progress. So it goes.
     I hope this helps and I hope a lot of other people comment. These are excellent questions. Jon.


Rosemary F's August 16 reply to Jan S' August 15, 2000 - Hi Jan, You asked about our experience with Celexa. I started to take it but for some reason it made me more depressed. I am on Welbutrin now and doing okay. Rosemary F. freemano@southwind.net


Ben B's August 16 reply to Jon's August 16, 2000 - Hi Jon, I have to agree with this post and say that although it is an interesting thing to wonder about, most of us will probably never know what caused our DCM. If we didn't get a bioposy that identified the virus/antibodies in our heart tissue then we will never know. Frankly, it doesn't really affect the method of treatment anyway. I have never known of anybody who had their DCM treated with anti-viral medicines although there may be a few rare individuals.
     It is my opinion that what we think caused it is probably not what caused it in almost every case. Also, what many of us think is the flu may actually be heart failure. The symptoms are very similar in many cases. In my case, I was overseas when I had my first bout of coughing and breathlessness from CHF. When I returned and was diagnosed, I was certain I had picked up some strange bug in Asia, because I had read about viral this and that in DCM. Then when a couple other people at work turned up with CHF, I was sure it had to do with work. My cardiologist told me that these symptoms didn't happen overnight and even though people call it viral, I'll probably never know exactly what caused it.
     In most cases people have weakened heart muscle for long periods of time before they even notice it and all the while, hormones produced by your own heart to combat the weakness are weakening the heart further. Many books I read said that DCM can lie dormant for decades before producing any symptoms. As far as heredity, I am sure it happens but I don't know how prevalent it really is. My dad also has heart failure but his is ischemic in nature from CAD, and I don't have any CAD yet. bdbrinkman@juno.com


Lydia Moore, August 16, 2000 - Dear Jon, Thank you so much for your reponse to me regarding Coreg. I do have a couple of other questions. When one comes down in dose on Coreg, do they feel bad in the same way as when one increases it? I have had the flu and about 4 days of diarrhea. It's hard to tell when changes have something to do with CHF or are just the flu symptoms. Does it take a CHF patient longer to recuperate from things like the flu? I felt much better and did a little gardening and now I am feeling sick again and I am back in bed. This has been a bad month and I have shed a few tears. I don't like to go to Pity City but it sure is easy when you can't see the light at the end of the tunnel. Thank you again for being there. I would feel so insecure without this site. God bless, Lydia. Flanders66288@cs.com


Jon's August 16 reply to Lydia Moore, August 16, 2000 - Hi Lydia, I take much longer to recover from any illness since getting CHF, including colds or the flu. I think that's usual. About that light at the end of the tunnel, one shines 24 hours a day. His name Is Jesus. ;-) Jon.


Rick M's August 16 reply to Lydia Moore's August 16, 2000 - Hi, All this talk of colds and flu (in August?) reminds of one of the reasons I am so unpopular. Since catching a cold, from a snowbird, about 4 years ago, I have taken steps to insure that I don't get another one. I have stopped shaking hands: on the street, in church, anywhere one is offered, while smiling sweetly and saying nice things. Some people are upset by this but better them upset by my refusal to exchange germs than me in bed suffering. I also avoid crowded places and sneezing snowbirds. I should add that I have not had a day in bed with anything since becoming so unpopular. Young mothers probably can't do this avoidance routine but if you're old and gray, it sure works. rearadml@iu.net


Tim Brownie, August 16, 2000 - Hi everyone, I haven't been here for quite some time due to sickness that made it impossible. I have been a heart patient since Ausgust of 1973. I've been there and done that when it comes to the heart. I had 3 open heart surgeries, with my last one being for 13 blockages, with 8 bypasses. Five of those blockages were 100% and I had a massive heart attack. That was my seventh MI. I made it through the surgery after dying twice, with 2 out of body experiences, which is something I'll never forget.
     I needed surgery again but was unable to have it because of scar tissue, so I had angioplasties. They did the second angioplasty in the only artery that I had open, and still do. Each time I had these done I was given 12% chance of pulling through but God was there and I'm still here. I've had 17 caths; Yes, 17. I've had 9 MIs now. Then diabetes hit me with a vengence and really did a number on my heart. My CHF then raised cane with me. In the last year I was able to take care of my large yard but now I can't do anything at all. It's all I can do to get up out of the chair and walk to the bathroom. I have to rest before coming back. I can't walk so I'm in a wheelchair.
     The way things are right now is very hard because I have become almost useless from deteriorating health. I sit at home every day for 10 hours waiting to see my wife, who works. All my kids are grown and gone. I have had some pretty bad CHF spells. I have an ICD, which is no help to me for this problem or with the diabetes that is raising havoc with my body, and leaves me pretty much helpless to whatever happens. Anyway, sitting alone these hours you do a lot of thinking.
     Even though I love the Lord very much and know where I'm going when I die, I still get anxious and have panic attacks when something happens to me that is new. I don't know if this is the end but I still get this way. I had a long talk with my doctor and he said there were things that he would prescribe for me to help me along. He has done that and I seem to have been able to cope with all the things that have been been thrown my way. I know that dying is an easy process when it is really that time, but I went through it twice, so I can say that. I just want my head screwed on straight when that time comes, so I can tell all my family what I will need to say before I go home to eternal life. I've got 3 months left since the sentence that was imposed medically but I have fooled them many times before. I really do think though that this could be the beginning of the end, just by the way I have deteriorated lately.
     So I just wanted everyone to know that there is medicine out there to help you die a happy and peaceful death, and not be scared about it. I really have to watch how much and when I take these meds because they can put you to sleep 24 hours a day. If you have any questions write to me here at Jon's Place or write me at bj_tj_54494@yahoo.com and I will help you as much as I am able. I love you all and may God be with you all and guide you and take your hand in your time of need. Remember, God will never give you more than you can handle.God bless us all. bj_tj_54494@yahoo.com


Don Hudson, August 17, 2000 - Hi, I have CHF and CAD with COPD. The pulmonary doctor said they lead to each other. My 20 heart and lung meds keep me confused. Do you know of any combined web sites? I had been overdosing on albuterol since the doctor said I could use it as rescue med, which I needed often. I shook so much and had PVCs with lower pulse and cold sweats that I had to leave any public gathering. Twice I was taken to the ER and given more CHF meds. All that I blamed the CHF for may have been COPD meds Now I am on Xopenex nebulizer, a levalbuterol without the side effects of albuterol. It seems to help SOB, weakness, and PVCs. I do see a cardiologist and pulmonary doctors in the same building and they send letters to each other. I had a MUGA but was not told my EF. It was 30-35% last year, class 3. I'm not able to drive now. jdhudson@webtv.net


Jamie S, August 17, 2000 - Viruses are our natural enemy. Viruses aren't rare; they are all around all the time, and there really isn't much you can do to get rid of them. Rick makes a lot of sense about the hand shaking. It's self preservation. It will drive you crazy to try to figure out where and when and who should have done what. It is human nature to try to demystify everything. I don't think that knowing will change treatment, though.
     Three years ago in December, I wasn't calm, cool, and collected. I feel like I spent too much time thinking about who, what, where and when. So it is this I pass on as some sort of advice: research your condition, evaluate your treatment the best you can and if you're feeling like your getting good care, live. I got a little freaked when I came down with coxsackie virus but hey, I have no control over whether it kills me. With a little help from my friends, the fear is past and I am fine.
     I can't believe it will be 3 years since coming down with PPCM, then in Febuary of 1999 being discharged with no meds and a clean bill of health. I still count my blessings and I think, hey, I may never have won the lottery but if my health is what I got lucky with, then I'll take it. Take care of yourselves. jamiedan@optonline.net


Jan S, August 17, 2000 - Hi, Under causes of DCM, I have had several nurse friends tell me that a lot of DCM is actually caused by heavy use of alcahol or drug abuse. Since I am not a nurse I didn't know how to respond to their information. Is it true? Geschuppja@aol.com


Jon's August 17 reply to Jan S' August 17, 2000 - Howdy-doo Jan, Cardiomyopathy is caused by alcohol and drug abuse for sure, but how many cases are caused by that is unknown. I've seen very few "official" guesses about what percentage of CHF is caused by this. People often pass off numbers as true that they have "heard", even nurses and doctors. Who knows what the actual percentage is? ;-) Jon.


Tom S' August 17 reply to Jon's August 17, 2000 - Hi, It seems to me the medical community's need to put causitive tags on conditions is in part a blessing and a curse. On the one hand, knowing what causes a particular condition or disease helps the medical detectives get a better understanding of how to cure, treat, or at least slow down the progress of the disease. I have a lot of trouble with the medical community tagging labels such as drug addict or alcoholic to individuals based on the flimsiest of evidence. Over the years I have watched the anti-alcohol groups tag more and more people with the label "alcoholic." They accomplish this, taking an impossible moral high ground, and by raising the number of indidcators such as must have a drink at a certain time of day, etc,..., to the point that there are a 100 of them now. It seems that even if you breath the fumes from a bottle of whiskey and like it, you could potentially be labeled an alcoholic. Perhaps it is anecdoctal but I have seen many a man and some women, drink very heavily all their lives and never have CHF or other forms of heart disease. They typically died of liver disease. Early on in my diagnosis the doctors were all too willing to tag me with an alcohol-induced CHF condition despite the fact that my intake of the "devil's brew" was well below that of a confirmed alcoholic. After a heart cath, which included a biopsy, and other results came in, including consultations with me, 6 out of 7 of my doctors all agreed it probably was viral in nature and could have even been the result of exposure to TB when I was very young. I would resist anyone in a position of authority who tries to tag a label as serious as alcoholic or drug addict on me or anybody else. The risks of that type of information being circulated among insurers and causing serious problems, even with Social Security Disability can be affected. I also think the medical profession likes to label people with that kind of behavior because it is easier for them and they can reap millions of dollars from prescribed treatment centers that can cost hundreds of dollars a day and in many cases do little to alter the behavior they were meant to treat. My experience with young people who have gone through drug treatment programs is that they generally find new sources for drugs they never thought of and new drugs to experiment with. bhigheart@hotmail.com


Jon's August 17 reply to Tom S' August 17, 2000 - Hi Tom, I'm sincerely sorry you were unjustly "accused" of something, but it is true that some cases of cardiomyopathy result from abuse of alcohol and certain drugs. A person may not qualify for some disability payments if his cardiomyopathy was self-inflicted. Actions carry consequences. I definitely agree that such a cause must be clearly proved in each individual case. Jon.


David A, August 17, 2000 - Hi, My wife and I took our first vacation in 2 years. We drove from the San Francisco Bay area to Medford, Crater Lake, Bandon and Portland; all in the state of Oregon. Returning, we took the direct route back via I-5 staying in Ashland, Oregon, overnight. My wife and I shared the driving, which was a great help.
     Since I am now on full disability, including SSD, I took my letter from Social Security and used it as evidence of my disability to sign up for my "Golden Access Passport" with the National Park Service. I did this with a ranger at the entrance to Crater Lake and it worked like magic: "No charge, sir." I later used it at Siuslaw National Forest on the Oregon coast, and received a 50% discount. So as some of the earlier posters noted, it is available and is one of the few bennies us CHFers can take advantage of.
     I wasn't sure how I would handle the altitude at Crater Lake. The rim village is at 7,100 feet. They have a web cam at Crater Lake. Check it out. So after driving all that way from Medford, Oregon, to the lake, when I stepped out of the car I took it real slow. Initially, I did get somewhat dizzy and got a swimmy-head feeling. But after walking a few moments things got better. Believe me though, at that altitude I was not ready to do any fast walking or jumping jacks and I was nervous because I didn't know how my body was going to react. My wife was ready to drive me right down the mountain if anything strange started happening! She kept a close eye on me at all times. We stayed at the crater rim for about 2 hours and then headed back down and eventually to the Oregon coast for the night. It was much cooler on the coast!
     My doctors are still increasing my Coreg from 25mg to 50mg, two times a day. Right now I am at 34.375mg twice a day. My weight is nowhere near 187 lbs. Is anyone else going up like this? I guess more is better. I have been getting my exercise by volunteering at the Guide Dogs for the Blind in San Rafael, California. They have a web site if you want to check it out. It is here. I've been walking career change dogs for about 9 months and it has been a good experience. The dogs are great. This is something I have always wanted to do but was never able to while I was working 50+ hours per week at the job. However, now that I have joined the leaky boat nautical society, I have the time and luckily the energy so far, to do it. Everybody please take care. Dezen@worldnet.att.net


Phyllis A, August 17, 2000 - Hi Jon, How are you all here? I haven't posted lately but I do read the board. I just wanted to say that whatever you do about merging the boards will be great. You have done such a great job here that I want you to do what is easier for you, my friend. Phyllis A. phylcasurv@msn.com


Jon's August 17 reply to Phyllis A's August 17, 2000 - Hi Phyllis, and thank you. The reason the links haven't been changed yet is because I'm trying to talk my daughter into doing the work on this one. I know how I'd like it done and she's better at that kind of web stuff than I am. <g> Jon.


Jon P, August 17, 2000 - Hi Jon, Two months ago I was told I have CHF, with an EF of 15% and approximately 4 to 6 months to live. I didn't think to ask the doctor many questions at that time but one comes to me now. After reading all these letters, I see no mention of heart transplants. Isn't that an option? jon.parker@att.net


Jon's August 17 reply to Jon P's August 17, 2000 - Hi Jon, Yes. it is an option. You can see lots of heart transplant recipients and those waiting for one at Me Too! However, I had an EF of 13% when diagnosed 5 years ago and I have not had a transplant, yet here I sit, talking to you. ;-) Don't get in too big a rush to get that donor heart while there is still hope for your own. Are you being treated by a CHF specialist? Jon.


Sandi's August 17 reply to Tim's August 16, 2000 - Dear Tim, I pray you prove them wrong again. God bless you and I am praying for you. I wish I could say something else but you have left me speechless. When your wife is working and you feel alone, think of all of us here thinking of you. I know a lot of us will be. I know you have touched us all. Sandi. chefal@bellsouth.net


Ken L's August 18 reply to Jon P's August 17, 2000 - Hi Jon P, Could you tell us a little more about your situation? I also learned that I have CHF caused by CM about 2 months ago, and I probably didn't ask my doctor enough questions initially because I was so shocked by the diagnosis. I'm 36 and my doctor told me I have a 1/3 chance of getting better, a 1/3 chance of staying the same and a 1/3 chance that I would need a heart transplant. Ken L. bumticker@home.com


Gus R's August 18 reply to Jon P's August 17, 2000 - Hi Jon P, Don't take "approximately 4 to 6 months to live" too seriously. It could be true, but the majority of the old timers here at Jon's Place have lived far beyond the predictions made at their initial diagnosis. I'll admit that the statistics may not be as good as I think because those whose predictions were accurate aren't here to talk about it, but the right attitude, the right meds, and a lot of lifestyle changes can throw those initial predictions out the window. If you haven't read Jamie S' August 17, 2000 post, do so. There is some good attitude advice there. Best wishes, Gus R. gus13@net66.com


Billie Jo's August 18 reply to Jon P's August 17, 2000 - Hey Jon P, Jon's right. I started out with an EF of only 10%, about as low as you can go without being dead! I was told that I should get on the donor list right away. Well, with the proper diet, exercise and medication, here I sit a mere 8 months later with an EF of 40%! That's only 20% from "normal" as I understand it, so don't start digging youre grave yet. I was ready to dig mine and it would have been in vain, for here I sit. Good luck to you and don't wait to see that CHF specialist! kritterkrazy@yahoo.com


John Len's August 18 reply to David A's August 17, 2000 - Hi David, Check also for a state park passport, which would do the same thing as a Golden Access Passport on the state level. I even got a permanent hunting and fishing license for the state of Virginia free, but alas, a little late. The mind says go but the body says no. :-( a_lenny6@hotmail.com


Karen, August 19, 2000 - Hi, I'm newly diagnosed with cardiomyopathy and CHF. I have lots of questions. I'm pretty handy with a Merck Manual and the Internet, but when you want the real scoop, ask the people who've been there. First is just the diagnosis. My doctor called it - and I was very careful to get it exactly - "non-ischemic non-dilated idiopathic cardiomyopathy." I haven't found any references to "non-dilated" CM, just dilated, hypertrophic, restricted, and peripartum. Has anyone heard of this? I'm going to ask her again when I see her next. The rest of the diagnosis I understand. I can't remember the second question. Oh yes, my memory problems are getting much worse. Actually, I had another second question but I truly can't remember it. Is this common, or am I just realizing it more now that I have something to blame it on? sloopiehanginon@aol.com


Ben B's August 19 reply to Jon P's August 17, 2000 - Hi Jon, Which medical test did your doctor use to come up with this prognosis: - ouija board, tarot cards, or crystal ball? <lol> I hate to be flippant but these doctors really steam me. Seriously, I think and hope you will be around a good deal longer. One way to assure that is to really press your doctor for answers to questions, including how he came up with this dire prediction, and why he didn't mention all possibilities if your time was really so short. If he won't answer, present him (or her) with the pink slip. bdbrinkman@juno.com


Joe S' August 19 reply to Jon P's August 17, 2000 - Hi Jon, Don't give up. I was told I had 3 months to live 2 years ago, and I was told I had 6 months to live 8 months ago. I guess I was one of the 1/3, because everything has now gone away. I did move to a high, dry climate, exercised more, ate right and did everything Jon's Place says to do. I drank distilled water, took CoQ10, and took naps daily. My doctor even told me 2 months ago I can go back to work. Now I am losing fluids so fast my hands are even thin. The only wierd thing is that after my thallium test, I lost all the hair on my arms and legs. Go figure! Good luck and we will all pray for you, Joe S. jes@stevensonlighting.com


Steve, August 19, 2000 - Hi, I have DCM. In March I had a stress test with thallium scan. My EF was 28%. An angiogram (cath) followed, My EF was 30%. On August 14 I had an echocardigram with doppler. My EF was 60%. Is an echo a legit test for this? Can I have confidence in the results? Best wishes to all. sdire@mediaone.net


Tom B, August 19, 2000 - Hi, I had a pretty neat turn of events on the standard 2 liters of fluid a day limitation. I started seeing the head of the University of Washington Heart Transplant Clinic and he determined that some of my dizziness and lack of energy was due to the fact that for me during the past 3 to 4 months, the 2 liters a day was too little and I was about 5 pints low on bodily fluids. They determined this, among other things, with an echocardiogram and some blood tests. He raised me to 3 liters daily about a week ago. It sure is nice now to more or less drink water anytime I want, although I still keep track. I have certainly noticed my lightheadedness diminishing. It has not gone away but has lessened. I haven't noticed anything as yet about any energy improvement but I wanted to share this with anyone else who might find it useful. As far as my doc is concerned, the 2 liters benchmark is certainly not a scared cow. tbehan@earthlink.net
 
Jon's note: Hi Tom, Do you take diuretics?


Leland Yee, August 19, 2000 - Hi to everyone, This was our first trip away from home, and we did it with Carnival Cruise Lines, through Alaska's Inside Passage. It was fun going on the cruise. We met a lot of new friends, we saw a lot of different sights and saw a lot of shows but I did not attempt to climb on any glaciers nor did I try to hike any trails. I walked the streets of the towns Valdez, Skagway, Juneau and Ketchican. I walked the length of the MS Jubilee and the different decks. These are the only negatives of the cruise:

  1. no scale handily available
  2. too much food, too high in sodium content, even though the dinner menu stated that it was low sodium, low cholesterol, low calories
  3. too tempting not to eat all the goodies (desserts)
  4. the change in temperature. Both Lily and I came down with colds
  5. medical help was not the greatest. I had a broken blood vessel in my eye. The emergency after-hours person asked if my glasses had broken. I said no. She said someone will come to my stateroom and take care of my needs. (strange?) Ten minutes later, the porter knocked on the door and brought in a bucket of ice for me! That was so funny that we promptly forgot my eye injury

When we got home after the cruise, I found that I gained 7 lbs in 7 days. Needless to say, I had to increase my furosemide dose to 40mg 3 times a day instead of my usual 40mg twice a day. So today after 2 days of increased furosemide, I am now back to my normal weight. By the way, gaining so much weight and then losing so much in such a short time is very taxing on the body. My apprehension about leaving home was very well founded. It's much more easier to control the diet regimen at home. I will probably hesitate going on any other trips in the future. Leland Yee. LLYee@socal.rr.com


Bill D's August 19 reply to Karen's August 19, 2000 - Hi Karen, Maybe you have ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy). <g> If you go here you'll see what it does. It says it strikes young people from 20 to 40 years old. You didn't say how old you are. It's an electrical problem. Any cardiomyopathy is a desease affecting the muscles of your heart. Your blood flow goes down and you're not able to get enough oxygen to your brain. We can't remember stuff for beans. Bill D, or E , or K or something. billdog@gate.net


David A's August 19 reply to John Len's August 18, 2000 - Hi and thanks John, for the tip about the access passport availability at the state level. I'll give that a try. Say, are you now living in Virginia? I noted your reference to a Virginia state fishing license. I did a lot of Bluegill fishing around lakes in Fairfax County years ago as a kid. Keep that hunting and fishing license current. You never know when it will come in handy. Regards to all. Dezen@worldnet.att.net


Kenneth M, August 19, 2000 - Hi Jon, Thanks for being out there. kmorss@gallatinriver.net


Pat Y, August 21, 2000 - Hi, Can you update us on your Coreg status? I am trying to make a decision whether or not to continue on Coreg. I would love to have my word finding ability and short-term memory back. I am hoping that yours improves as you come off Coreg. If so, that will give me just a little more information to plug into my decision-making process. Pat Y. PTYoumans@aol.com


Jon's August 21 reply to Pat Y's August 21, 2000 - Hi Pat, I'm at half my highest dose now. I'm stuck here until the 28th, when I see my CHF doc again. He wants to talk about it and examine me before I go down further on more than one drug. I have slowly dropped my Lasix over several months from 120mg a day to 40mg a day, with no real problems. Of course, I watch my sodium intake. I'll know more in a week about where I'm headed. I had a wonderful month followed by last week, which was terrible and then some. It's still very up and down for me. Jon.


Tom B's August 21 reply to Jon's August 19, 2000 - Hi Jon, Yes on the diuretic question. My Lasix was 40mg a day, dropped from 40mg twice a day at the same time he increased the water. Have a good one. tbehan@earthlink.net


Jon's August 21 reply to Tom B's August 21, 2000 - Hi Tom, I was curious if your doc was checking you for dehydration on a regular basis. It's an ever-present danger for anyone on a lot of meds, especially on restricted fluid intake. That's why I mention it in The Manual. Success With Heart Failure by Marc Silver has some interesting comments on fluid restriction. Naturally, like everything else, it's very individual. Jon.


Cheryl G, August 21, 2000 - Hi Jon, After reading all the posts today, I was blown away. I couldn't believe you and others were taking 50mg Coreg twice a day. I just flunked titrating up on Coreg at a whopping 6.25mg twice a day. My blood pressure was 84/58 and they wouldn't increase my dose. I have to see my doc in 2 days to see what he wants to do with me. I was told by my doc's PA that a 12.5mg dose of Coreg twice a day would still help me and they expected me to make it there but my body seems to have different plans. Have you heard of a 6.25mg dose of Coreg twice a day helping anyone? I 'm begining to wonder if all the baby doses (2.5mg Zestril once a day) of medication are of any benefit to me at all. Is anyone else in this boat? Garciaa@prodigy.net


Jon's August 21 reply to Cheryl G's August 21, 2000 - Hi Cheryl, When a doctor speaks of "benefit" he means it differently than you and I mean it. He refers to whether there has been a benefit proved in clinical trials at that dose for people with your condition. We mean, "Will it help me at all?" <g>
     Personally - and I'm just giving my own opinion, as always - I would try to get my ACE inhibitor dose up and forget Coreg if I had really low blood pressure. Jon.


John Len's August 21 reply to David A's August 19, 2000 - Hi, I do live in Virginia Beach and my hunting and fishing license is permanent, although later ones were issued for $1, but on a year to year basis. When they enacted a saltwater fishing license, they would not include that in the freeby license and living near the Chesapeake Bay bridge tunnel - the best fishing in the US - makes that a bummer. Oceanside beyond the mouth of the bay does not require a license. a_lenny6@hotmail.com


Jeanette's August 22 reply to Cheryl's August 21, 2000 - Hi Cheryl, I take 6.25mg Coreg 6.25 mgs twice a day and it works great for me. I have been at this dose since I was diagnosed over 2 years ago and have been stable the whole time. This is all I can handle, according to my cardiologist, and it seems to be working fine. My EF has been idle at 20% with no backsliding. If I take more than this amount, my BP would go lower and it is already 102/70. My doc doesn't want it to go any lower than this because I black out and tend to get very dizzy, more so than usual (blonde joke <g>). I hope this helps you out, take care and I am praying for you. Let me know how things go. Jeanette. jeanette841@yahoo.com


Dana J, August 22, 2000 - Hi Jon, I just wanted to say thanks for the information you gave me by e-mail a few weeks ago. It's really helped and you have given me hope. I read the boards every day and I'm learning a lot, but I still feel lost at times! I'm seeing a new cardiologist on the 24th. The last two doctors I have been to have given me different diagnoses. The first round of tests by the first doc showed that I have CHF. My second opinion doc disagreed after running all new tests, and said that I have arrhyhthmia, although he said I have all the symptoms of CHF. He has me on 40 mg Lasix twice daily, 5 mg Zaroxolyn twice daily, 50 mg Toprol-XL daily, 4 mg Bumex daily and 80 mg potassium daily. It will be interesting to see what this new doc says. I dread going through all of this a third time and frankly, it's wearing me out running back and forth so much. I was wondering, did anyone else have this much trouble getting a correct diagnosis? Thanks again for being here and God bless all of you. danajj2@aol.com
 
Jon's note: 4mg Bumex AND 40mg Lasix bid? Wow!


Mary H, August 22, 2000 - Hey Y'all, I was wondering if anyone else has a problem with a nagging feeling of a stiff left shoulder blade? This has been going on since I found out my heart was enlarged. Some days it is better and some days it isn't there at all. Could it be heart related? Also, I have the cough with that tickle in my throat. My throat swells almost shut at times due to acid reflux and this really annoys the cough. I have had my throat dilated in the past due to coxsackie B virus. My family and I believe this could have a relationship with the DCM I developed. My son had the virus referred to as the foot and mouth disease. I had white patchy spots scraped from my throat when the dilation took place. My throat was 85% swelled shut. I then went on to the lovely mono virus bug and it was rampant when I was diagnosed with DCM last year.
     I know that many of us will never know the true cause of our heart-related problems, but I truly believe the two viruses together attacked my heart muscle. The coxsackie virus is a bad one with not many people knowing it even exists. It is related to chicken pox. Like any virus, once you have it there will always be a bit of it in your body. Any insight on this virus would be greatly appreciated.
     Also, I have a feeling in my left lung like I have pneumonia. It is only occasional and feels like it does when you breathe in a breath of really cold air. Any ideas? I have an appointment in a month or so with my cardiologist, so any input for this one will tide me over until then. Thanks, and may the good Lord bless us all. Mary. M123_@excite.com


Jon, August 22, 2000 - Hi everyone, Just to let you know the search engine will continue to be cranky for awhile. I have to get the last 2 big sections of my site moved to the new server and then make a new account on both servers to get it all searching correctly again. I'm working on the Kitchen Corner section now, making it easier to navigate, adding recipes and making it all printable, complete with a sodium listing on each recipe page. It's slow going but it's going. ;-) What I'm really not looking forward to is adding my site to 18 zillion search engines all over again at the new Urls. :-( Jon.


Ruthie A, August 22, 2000 - Hi to all especially the newbies, I have been feeling wonderful for so long that I began to wonder if I was really sick. One night of shortness of breath convinced me for sure of that one! Of course, I have been taking max doses of my diuretics and adding Zaroxolyn twice a week. I have watched my sodium and fluid intake rather carefully, too. So when my husband still had not found a job, we decided that I was well enough to get one. I am now working as a long-distance operator. It is very good in that I sit all day, so it is easy on my back. It is very bad in that I sit all day, so I don't get the exercise I used to get.
     Here is my question: Is there anything I can do at my desk to keep the circulation going in my legs and feet? I find I am swelling up a lot in my feet and I think most of if is just lack of exercise. Please help. I cannot afford to quit, but I cannot afford to swell up either. Just another episode in the saga of my life, I guess. Ruthie A. rlaba@mindspring.com


Sharon J W, August 22, 2000 - Hi, Lee R will be filling us in, but I'm happy to report that Margie F got her new heart. Our prayers are with her and her family. I also thank the donor's family for giving the ultimate living memorial to their loved one - donated organs. delwill@gateway.net


Bobbye's August 22 reply to Leland Y's August 19, 2000 - Hi Leland, I've been a lurker on this board for over a year but haven't posted. I was diagnosed Easter week of 1999 with CHF. The typical - they think it was caused by a virus. After an MI and a week in the hospital with all the normal tests, I had an EF of 20 and was put on Lasix, warfarin, digoxin, Prinivil, and have gone up to 25mg Coreg twice a day with no problems. I've since gone up to an EF of 40-45% and was taken off warfarin and only take Lasix as needed.
     I'm not sure if it was stupidity on my part or what, but on discharge from the hospital I asked and the doctor told me I could go back to work in a few days and I did. Really strange - I had absolutely no energy and couldn't walk from the parking lot to the building I taught in without sitting and resting on the way. The only thing he said was don't carry anything over 20 pounds and warned me that my heart was so weak it might just stop. Cheerful, wasn't he? I teach computer science at a local community college.
     Why I was brought out of lurking is that you mentioned my favorite way to travel - cruises. Okay, to be honest I am a cruise addict and don't want to join a 5-step program! I had been on a cruise a few weeks before being diagnosed. I thought I just couldn't get over a cold before I left but things got worse when I was away, with major swelling in my legs and I couldn't sleep at night because of coughing. My husband and I went on our next cruise 2 months after my diagnosis and have continued to cruise.
     My first cruise after diagnosis was a bit scary for me, to Europe. The flight over and back turned out to be harder than the cruise itself on me. Leland, consider traveling by ship again but here are a few helpful suggestions:

  1. Every ship I have been on has a scale right inside the infirmary door or close to it. I check the first day and then take a trip down every morning to weigh myself
  2. The first night, speak to the Maitre'dee and explain your requirements. Usually they bring the menu for the next day to me the night before and go over my order for the next day's meals and cooking instructions. Sometimes I do have to push to get what I want
  3. Too-tempting desserts: Thankfully I prefer the meal itself to the dessert! I do gain weight on a ship but it's because I eat more than normal
  4. Colds and flu: Unfortunately that is part of traveling. All it takes is one person sick on an airplane sharing their germs
  5. Medical help: That varies greatly from ship to ship. My rule of thumb now is to cruise on the larger, newer ships. They are very well equipped. Since I'm using their scales, I also have been able to have some medical center tours. On the Voyager Of The Seas this past July, they actually had a small operating room, a lab, x-ray, and several different treatment rooms. The doctor I met was full-time staff on the ship and had been the head of an emergency room

Bobbye@ravenet.com


Tonya Dean, August 22, 2000 - Hi, I would like to hear from other young mothers who developed PPCM after the birth of a child. I was diagnosed December, 1999. rntdean@jcn.net


Barbara, August 22, 2000 - Hi, I am new at the computer so I hope I have this right. I was diagnosed in May with DCM. I am now having memory problems. Is this part of the heart problem or something to do with all the meds? Sleeping is also becoming a problem. I am getting 5 hours at night and need at least 2 naps per day. Thank you for any info. HappyEloise@aol.com


Jamie S' August 22 reply to Ruthie A's August 22, 2000 - Hi Ruthie, Get a little step stool or something about 6 inches off the ground. I used a ball; that way I could rock my legs back and forth and I had a little routine I would do too. Also make sure your chair is ergonomically correct so the back of your legs aren't pressing down against the chair, blocking blood flow. Your employer should have a trainer or office manager trained in ergonomics. Ergonomics is the study of a worker's body at her work station. A lot of compaines started doing this because it cuts down on work-related injuries. I hope it helps, Jamie. jamiedan@optonline.net


Ophelia's August 22 reply to Bobbye H's August 22, 2000 - Hi Bobbye, Thanks for your comments, since my husband and I are about to make our reservations for a cruise next year. That's how we plan to celebrate our 10th year anniversary. My last cruise was wonderful, but again, I wasn't sick then. I'm also planning on flying out to see my sister next week for a week. She thinks I need a change of scenery for awhile. I am very concerned about all the germs floating around the plane but hey, I have to take some risk sometime. Again, your post was very helpful. omclain@hotmail.com


Ernest D's August 22 reply to Cheryl G's August 21, 2000 - Hi Cheryl, I was on 12.5mg Coreg twice daily for 3 years and it did help me. A recent increase to 50mg per day did not work out too well so now I am back to 6.25mg twice a day and trying to get back to 12.5mg twice daily. If that doesn't work, the doctor says he will try a different med. Good luck. xerez@att.net


David A's August 23 reply to Bobbye H's August 22, 2000 - Hi Bobbye, I read your post to Leland with interest. My wife and I are considering a trip by air but one of the factors we are wrestling with is the travel by plane and the unknown factor of how I will do on a long or a short flight. We have gotten a number of opinions regarding travel by air with CHF but find the possible risks unsettling and possibly putting a damper on the whole trip. Plus the constant worry factor about one's health when away from home.
     I noted in your statement you mentioned about your trip to Europe after your diagnosis and the hardship of the airline travel prior to and after the cruise. I'd really appreciate it if you could give me some idea of your airline experience that time and previously, what happened and how you worked out any problems you may have encountered. Thanks in advance and happy cruising. DEZEN@worldnet.att.net


Tom B's August 23 reply to Barbara's August 22, 2000 - Hi Barbara, I'm responding to your post on the CHFers' board. It has been my experience that my memory problems were evident (with hindsight) with the onset of my CHF, however they were noticeably worse when I began my medications; Not so much so that I'm inoperative but certainly it is annoying. I guess the memory problem gets us coming and going.
     I'm age 55 and I also had significant problems sleeping. My doctor put me on Trazadone, which is actually an antidepressant but it has made a significant improvement in my sleep. I get 7-8 hours of pretty good sleep and after a slight morning after effect that lasts for an hour or two, I'm usually up for the day. We are still tweaking the dosage on this so maybe I can get rid of the daily hangover, but sleeping a full night is sure nice. Don't get me wrong, I'm never well rested because of the 7-8 hours, and even after getting past the hangover, I still feel tired with very minimal exertion. In fact my idea now of vigorous exercise is fast typing! I hope this is of help and best wishes to you. Tom. tbehan@earthlink.net


Jean C's August 23 reply to Mary H's August 22, 2000 - Hi Mary, That left shoulder blade and left chest pain could very easily be an alarm signal going off. My heart difficulties were discovered when I went to my doctor thinking I had bursitis. She referred me to a cardiologist immediately and when he did an angiogram, he discovered that I'd had 4 heart attacks before the left side pain set me off. I can't urge you strongly enough to call your doctor or your cardiologist and see if you can't get some relief before next month. Take care, Jean C. ojean@oz.sunflower.org


Ginger, August 23, 2000 - Hiya's, I just thought I would run my mouth since I have been quiet for awhile! <g> I can't take Coreg at all or any beta-blocker due to bradycardia. I have been feeling really lousy for about he last week but kept putting off going to the doctor. I guess I really thought it was gonna be something I didn't want to hear is why. As most of you know, I have been dealing with a lot lately.
     Well, a couple of months ago I started out wanting to drop 10 lbs. Well, I did, 25 of them actually. I was not even aware that it was anywhere close to that because I had stopped trying after the 10. Anyhow, I never thought about weight loss making a difference with the meds we take. Boy was I wrong! I ended up with my BP in the toilet and being dehydrated. That is why I felt so lousy. I was really scared to go back to the doc because if my feeling so lousy was due to my heart function dropping I didn't want to hear it. I have heard all the bad I can handle right now.
     So the moral here is, Coreg is great but if ya can't take it, don't let it get to ya. If ya feel lousy, don't not go to the doc like I did. If you lose or gain weight, your doctor needs to know about it. I am sure every one of you here know all this. I am probably the only stupid one that didn't watch their weight like they are told to do and didn't know that our weight matters when it comes to our meds. I got one dropped totally and the others reduced a lot. The only thing that concerns me is that I got my ACE inhibitor cut by 2/3. I went from 30mg a day to 10mg. That makes me a little nervous. I told that to the doc too. He came back with the statement that sometimes people get off their meds totally if they stay improved over a certain amount of time. I told him I thought it would be wrong to ever totally stop taking the ACE inhibitor.
     Anyhow, where it all got me is back to some testing in a little while. They are gonna start with the good ol' treadmill in 2 months. That is to see if I still have the arrhythmia problem and how my endurance is. I don't know where all this is leading but I will let you know. He was teaching a student the day, and I was there too on my way out and I heard her say to him, "Don't most people with cardiomyopathy die within 5 years?" Talk about old-time thinking, and she is a student! Now that is scary. His reply was, "Not anymore." Please continue to keep my brother Jack in your prayers as he is having a real hard time with the chemo. Thanks in advance, ya'll. Stay well and don't be stupid like I was. Hugs and prayers, Ginger. angelgin@bellsouth.net


Wendy Booz, August 23, 2000 - Hi everyone, I'm Wendy. I ended up in St. Vincent's here in New York on April 12 and was diagnosed with CHF; a big shock to me since for all my adult life I've been treating any illness with a can of beer and an aspirin! Can anyone say, guess what caused the CHF? No kidding. What I'd like to know is how does one cope with the insomnia? It's driving me crazy! I've rarely had it before and when I did, a can of beer usually solved the problem. This no longer being an option, what do I do now? What with the medication I'm already taking, I'm a bit nervous about adding sleeping pills to the mix. Any ideas? boozw@winstim.com


Lydia Moore, August 23, 2000 - Hello everyone, I have been noticing a lot of posts regarding insomnia. This is my biggest problem. I am glad I am not alone and at the same time I don't wish it on anyone. We are already tired enough from CHF and don't have much energy, and then we can't even get a good night's sleep. I can't imagine that is so good for the heart. It is so hard to plan anything when one is deprived of sleep. I am on Paxil but it does not seem to help any. There has to be some solution to this insomnia.
     I think we need to all start praying for each other and ask God to grant us some good sleep. We just have to stay in the moment and appreciate what we can do and what we have. It helps me to think of Christopher Reeves when I am down. At least I can walk and do the things I love to do. I can't imagine being confined to a chair, paralyzed, unable to even hug my children. I honestly don't know how he does it but I do know that compared to him, I have it made. I think about him often and pray for him. God has put him in my life so I can deal with mine. Thank you Christopher, for your courage and inspiration. Lydia. Flanders66288@cs.com


Tom S, August 23, 2000 - Hi, Far be it from me to express an opinion but I haven't got a clue what Coreg does or does not do for me. I had absolutely zero reaction to it when I started taking it and when I increased my dose to the current 25mg twice a day in pretty short order. In my opinion I feel like a guinea pig involved in a gigantic medical trial of a drug that cardiologists hoped would become the Viagra of the CHF crowd. Perhaps it does play a role in longevity but as far as "feeling better" I have actually felt as if I have declined in stamina and strength since starting the drug nearly 4 years ago. Lately I feel very weak and suffer some pretty severe leg aches and pains, and have to lay down for a couple of hours several times a day if I as much as play around on my computer. bhigheart@hotmail.com


Jeanette's August 23 reply to Barbara's August 22, 2000 - Hi, Are you taking Coreg? Coreg is known to have a side effect of short-term memory loss and sometimes lack of sleep. I have been on this for over 2 years since being diagnosed with DCM and have noticed that I have a hard time with completing sentences and remembering things that are around me all the time. I have no problems with past stuff but a phone number or address gets me. I even have to write things down like appointments and times and details of things I have to do so I can remember to do them. It is a real pain but if this is all we have to put up with for side effects, I will gladly keep it. <g> I hope this helps. You might ask your doc about Tylenol PM or something like that for the lack of sleep you are getting. For me, I just play on the pooter till I get so tired I have to go to bed. Take care and I am praying for ya. Let me know how things go, Jeanette. jeanette841@yahoo.com


Frank S' August 23 reply to Tom B's August 23, 2000 - Hi Tom and all, I have been taking Desyrel (trazodone) for a long time, also for sleep. I have the same basic reactions. I cut my dose back to 50mg so the hangover and hard-to-wake-up feelings are not as severe with the lower dose. Later, Frank Smith. marquasmith@lycos.com


Wilma H, August 23, 2000 - Hi, I was just diagnosed with CHF. The water pill doesn't work and my family doctor, whom I have been with for years, doesn't act like it is a big deal. I have a history of strokes and mitral valve prolapse so all these tests don't bother me. What I need to know and can't get answered elsewhere is exactly what, if anything, caused this, what is the best treatment and where can I get accurate information? I want to avoid surgery if possible. Can anyone point me in the right direction for answers? Thanks, Wilma. kathinds@yahoo.com


Yvette W's August 23 reply to Tonya Dean's August 22, 2000 - Hi, I was diagnosed with PPCM 3 months after the birth of my daughter in December of 1996. I had extremely high uncontrolled blood pressure during the last trimester. There was only one medication they could give me while I was pregnant that was proven not to harm her. About every 2 weeks, they kept doubling it until they couldn't anymore. I was 26. mommahouse@att.net


John Len, August 23, 2000 - Hi, Since I've had my heart blasted full of holes and had my last bypass, I have not had any angina except in the evening, and when my blood sugar drops to normal (80-110). I can understand the rundown, pooped bit setting off some angina but what would my blood sugar have to do with it? I am a insulin dependent diabetic. a_lenny6@hotmail.com


Bobbye H's August 24 reply to David A's August 23, 2000 - Hi David, Since my diagnosis I've been to Europe 3 times. The first flight I had quite a bit of edema in my legs. After that flight I have made it a point to get up and walk around quite a bit during the flight. Also, when I am sitting I try to move my legs quite a bit and just get that blood moving. Things overall have been better. I also make sure I call and order special meals and bring some safe snacks with me. Airlines just love to give us salt, don't they? Pretzels, nuts, etc,...
     All this worked well until this past summer. Unfortunately, air traffic control went down over London and we ended up sitting on a remote taxiway at Rome airport 7 1/2 hours, waiting for them to either cancel the flight or take off. They finally canceled but sitting that long was exhausting and I got quite a bit of swelling. They did provide a hotel that night. The next day we finally got away from Rome but London was a real zoo with thousands of people standing in lines trying to get flights. At that point I was really wondering if I'd make it home in one piece. We ended up taking about 38 hours to get home and I was exhausted for a few weeks after. This is a rare occurance. For shorter flights I really have very little trouble. I just make sure I avoid the salt and bring my own snacks if I feel I need munchies.
     I do always make sure I take out travel insurance that covers pre-existing conditions. If I had to be air lifted from a ship or foreign country, we'd be talking about major costs and my health insurance does not cover out of country expenses. Usually I try to pick safe locations, ships and countries that have good medical facilities. I do try to listen to my body and don't go nuts sightseeing; Just take it slow and easy, and watch my diet carefully.
     At my first check up after the hospital, my doctor told me he was placing no restrictions on me and if I wanted to travel, to enjoy myself. Truthfully, at that point he was pretty much gloom and doom on my physical status though. I got the impression that he thought I could drop dead as well on vacation as here so what difference did it make! Things have improved. I'm one of those people who live to travel, and as long as I am able I'll continue. I think my family at first thought I was nuts when a few weeks after diagnosis I told them I had arranged a cruise for my husband and myself. I was apprehensive but I think I had to prove to myself it was still possible. bobbye@ravenet.com


Helen Otis' August 24 reply to Cheryl G's August 21, 2000 - Hi Cheryl, I have been on the same dose of Coreg since they found my CHF and DCM in October of 1998. That dose is 3.125mg twice a day. In the beginning they also had me on Vasotec. However, the combination dropped my BP to 70/58. I have always had low BP but this almost put me in a grave. With my Coreg dose, my normal BP is 96/70. I hope this helps you some. Take care, all. Helen Otis, age 26, EF 25-30%. haotis@juno.com


John Len's August 24 reply to Ruthie A's August 22, 2000 - Hi Ruthie, One of the things I did was go on e-bay auctions and get a lymphmatic pump, which came with 2 leg boots. I use it at night for about an hour to shrink the foot and ankle, a few times a week as needed. I also use a nerve stimulator to work the affected muscles in my lower leg and foot to good effect. When everything else fails, I use Lasix for a day or two. Between all of these things I keep the swelling under control. The only way I could afford this stuff was e-bay auction and someone up there keeping the price affordable for me. a_lenny6@hotmail.com


Janet S, August 24, 2000 - Hi, I'm not a very seasoned traveler and haven't been on a plane since being diagnosed with cardiomyopathy 2 years ago. Are there risks in flying? Are there special precautions I need to take? I'm tentatively planning a short flight with my daughter on a business trip but don't want to ruin her trip with an emergency. Thanks for any help you can give me on this. I haven't checked with my doctor yet but surely people with heart problems aren't prohibited from flying? jsmith@state.mo.us
 
Jon's note: See the CHF FAQ


Brenda H, August 24, 2000 - Hi Jon and everyone, It's been awhile since I posted. My last echo showed my EF in the normal range; 55%, up from 18%! So I'm soooo excited. Does anyone out there have any info on future pregnancies or where I could look up what the risks are? Thanks, Brenda H. Bhanson@mstar2.net


Phred, August 24, 2000 - Hi, This is my first time on this message board. I'm male, 48 years old, have CM and CHF, and have had 3 heart attacks. My EF is 28%. I take 25mg Coreg bid, 10mg Prinivil bid, Zocor, Lanoxin, Coumadin and Lasix. I am tired almost all the time. With this combination of medications and history, I have regular incidents with, shall we call it, the Bob Dole Disease. Any input from you guys out there who have dealt with this in the past would be appreciated. phredtm@aol.com


Tom B, August 24, 2000 - Hi, I seem to recall that a lot of other folks have noted that medications and/or pacemakers seem to improve their "numbers" but their energy level stays the same. That happened to me. I went from 19% EF to 40% but still feel the same. The consensus I've seen on this site is that "Well yes, that happens." That's also the reaction I got from the nurse in my CHF doctor's office.
     But it sure seems to me there ought to be a physiologic reason for not feeling better. It can't be that we are all just mentally lazy; that we really have more energy than we think we do. Likewise, I have an extremely hard time believing that if my heart is doing so much better at pumping that I can't detect some level of improvment otherwise in the energy/stamina department. Anybody got any input on a root medical cause for having better numbers, but still feeling lethargic? tbehan@earthlinnk.net


Jon's August 24 reply to Tom B's August 24, 2000 - Hi Tom, A published CHF specialist takes a crack at that one in my CHF FAQ here. In 90% or more of people I talk to with this situation, Coreg is the "number-raiser." I am going to be discussing this in depth with my own CHF doc Monday and will post about it. I have a feeling the beta-blocker's depression of our nervous system is both the hero and the culprit. It allows our heart to rest and thus improve but drags us down energy-wise at the same time. I'll get back to you on this one. Jon.


Cathy, August 24, 2000 - Hi, It has been ages since I posted but I read the posts often. I have a question that may have been asked before but I missed it. Does anyone have trouble with yawning? It is really a struggle to get a breath when this starts and can last at least 30 minutes or more. It seems to be happening more often. I have CHF and have had it 2 years and feel I am doing really well considering where I was 2 years ago. Thanks for being here, Cathy. cpalmer@megalink.net


Thomas, August 24, 2000 - Hi, I am asking about sex and CHF. While traditional erections are out of the question, what about other ways of having sexual pleasure? Can our hearts handle the excitement? drtomwoods@hotmail.com


Jon's August 24 reply to Thomas' August 24, 2000 - Hi Thomas, While some CHFers cannot get an erection, it is definitely not "out of the question!" If you can walk up a flight or 2 of stairs without getting completely winded, you can probably fool around without dropping dead, although you might want to ask your doctor about it, too. Jon.


Harry Beardsell, August 24, 2000 - Hi, I have dilated cardiomyopathy and CHF. I am now taking amiodarone, quinapril, furosemide, and my EF last February was 12%, at which time I started on a 2 year phas 3 trial to blind test a new heart drug named etanercept. Since being on this program my condition has improved and I have much more energy and fewer heart problems. I will have my next MUGA test at the end of one year to see if my EF has increased or not. They hope this drug will arrest the disease and maybe reverse it. There are 800 plus patients in this trial in the USA and Canada. I would like to get in contact with some of them to exchange conditions or if anyone wants to know more about the drug, they can e-mail me. Always have a positive attitude! hbeardsell@home.com


Roman Garcia, August 25, 2000 - Hi, I need information in regard to gene therapy for my heart failure. AdelfaGM@aol.com


Kim Sebastian, August 25, 2000 - Hi everyone, It's been a long time since I posted! I wanted to let everyone know that I am featured in the August 29th issue of Woman's World magazine, on the stands right now. The article focuses on my ordeal with peripartum cardiomyopathy and the support group I started 1½ years ago. There has been so much awareness created regarding PPCM in the past couple of years. I am doing well and feeling well. I am still on Coreg, digoxin, and Vasotec daily but am back to work. I am working part-time as a registered nurse in a local alcohol/drug rehab. The Lord has blessed me in so many ways. I am just one more testimony of His healing power. Take care. lalakimmie@aol.com


Tonya Dean, August 25, 2000 - Hi, Anyone from the St. Louis, Missouri area, please contact me. I would like to compare notes on PPCM and CHF. rntdean@jcn.net


Sylvia's August 25 reply to Thomas' August 24, 2000 - Hi, As a female with CHF, let me mention to those interested that sex can be very fulfilling if your mate follows a couple of rules. One, he must not lay his body weight on your chest, even when resting. Secondly, it is much easier on both of you if the woman takes the upper position. No, the excitement and exertion does not seem to have any lasting effect so lay back and enjoy. We aren't dead yet. ;-) syledmonds@aol.com


Dana J, August 25, 2000 - Hi, My new cardiologist has increased my Toprol-XL from 50mg once daily to 50mg twice daily. He said that in the next few weeks he wants to see me up to 100mg twice daily. Does anyone else take 200mg in a 24 hour period? danajj2@aol.com


Dan Parks, August 25, 2000 - Hi, I need to find a good CHF specialist in the Jacksonville, Florida area (for my mother). Any help appreciated. dan_parks@csx.com


Lydia Moore, August 25, 2000 - Dear Jon, I have been dealing with a pretty bad gum infection that has kept me in bed most of the time. I was put on very strong antibiotics. I have felt like a truck has run over me for the past two weeks and wonder if I am ever gonna feel good again. Also Jon, I am coming down to a lower dose of Coreg. Does coming down on the dose also do a number on us? I am so drained I can't believe it. I would appreciate some input if you have some. I feel a bit down about all this. Thank you and God bless, Lydia. Flanders66288@cs.com


Laurie A, August 25, 2000 - Hi everyone, I haven't been on in a couple of weeks because I went on vacation and of course when I got back, I had some extra water on, so I have been fighting to get that off. I have 2 questions though, that I am trying to find answers to, so again I turn to all of you. The first one is about a feeling in the throat that I get, like a choking feeling. I believe it has something to do with regurgitation when I am retaining water but I don't know. Any help?
     Next is regarding a therapy I was told I may have to have done if my blood pressure keeps dropping into the 70s over 40-50. I am taking the lowest dose of Vasotec twice a day and have been told to take it only once a day for the next 5 days and if it doesn't help, I would have to go into the hospital for an infusion therapy that will require like a 24-48 hour stay. Any help? You are all in my prayers. Sarg0911@aol.com


Mike W's August 26 reply to Dana J's August 25, 2000 - Hi Dana, I take 50mg 3 times a day with no problems. I also take 50mg Cozaar bid and 40mg Monopril bid, plus digoxin. That's a pretty heavy dose of each, but I've been lucky. My whole life I've never really had any of of reaction or problem with heavy drug doses of any kind. I have a long history of taking psychotropic (mind altering) drugs also. I'm kind of large at 5' 11" and 215 lbs. It seems like the 200mg a day is a large dose but it doesn't seem off the wall. How are you handling the current doses, I think may be the more important question. Peace, Mike Wafkowski. mikeyw@sohogurus.tzo.com


Donna Zak, August 26, 2000 - Hi, I would like to pass this information along. To anyone who is taking Coreg and Aldactone, please watch your blood sugar levels. I was switched from Coreg, Lasix and K-dur (my blood sugar levels were fine) to the Aldactone and my blood sugars went up a lot. When I called the transplant doctor I was told it was because of the Aldactone. I had to go on insulin because of this jump in my glucose levels so I thought for anyone out there who is diabetic and on the above meds, please monitor your glucose levels more closely. dzak@worldnet.att.net


Jeanette, August 26, 2000 - Hi all, I hope you are all doing well. I went to my regular doc yesterday on the advice of my cardiologist. For the past 5 months I have been extremely tired and just no good to anyone in the aspect of daily chores. I would go to bed at 11:00 PM, get up at 9:00 AM and be back in bed by noon for a nap. The docs feel that I have sleep apnea and that I need to be admitted and have a sleep study done. Has anyone ever had one of these done and what can I expect to happen besides being deprived of 24 hours worth of sleep? How do they keep you awake? I am lucky if I can stay awake for 10 hours and that is after a nap! Any imput would be greatly appreciated. Thanks, Jeanette. jeanette841@yahoo.com


Brenda H, August 26, 2000 - Hi all, Thomas, I've never heard of that before with men, being a woman but I did notice a lack of interest in sex when my heart was weaker. What is your heart condition now, your EF?
     Tonya, I'm not in Missouri but have PPCM and would love to chat with ya. Jon, can you tell me what Toprol is? I've just recently heard of it. Thanks, Brenda. BHanson@mstar2.net


Sharon P's August 26 reply to Laurie A's August 25, 2000 - Hi, Difficulty swallowing is one of the symptoms of an underactive thyroid. The anti-arrhythmia heart drug amiodarone can frequently cause thyroid problems. I know this because Friday the 25th I was diagnosed with this problem after 6 months on amiodarone and now have added Synthroid to my already too-full pill box. You may wish to have this checked out. sparker103@home.com


Barb L S, August 26, 2000 - Hi everybody, I wanted to thank everyone for all of your support concerning depression. It has helped in ways you can't imagine. I have not posted in awhile; not because of that but because I was in the hospital for transplant evaluation.
     Brenda H, I had been a class 3-4 when at Columbia. Now I've switched CHF specialists thanks to a very special person and Dr. Gass not only did an echo but also a MUGA scan. That showed that my EF is back up to 47%! I did get excited and still am but this has happened before. So yes, it does happen and may stay that way for both of us. I pray it does. I do have a question. Do you have any of the old symptoms left? I do and that's why I'm asking. I have learned to listen to my body, stay away from any stressful situations and listen to my doctor, who is a CHF specialist. Currently, I am class 2. This is a blessing. I haven't been diagnosed this healthy in 3 years, so of course I went and overdid it. God bless you and may you continue to have such blessings.
     Hi Jon, I wrote an e-mail last night to you to explain that I cannot access my new account because it was inactive for 30 days and I have to use this one. I hope after all this typing, it works. <g> My question is, since this happened before - my ef getting better - is this a common thing? I have edema in my ankles, which I haven't had for a year and I have to wait until Monday to find out what is going on.
     Also everybody, again I would like to thank each and every one of you for taking the time to post to me and I apologize for not answering sooner. I haven't had phone or internet service for a month. I needed a break from things and to renew my faith spiritually. I needed to meditate and have quiet time and find out who Barb is these days. So thank you all again.
     Hi Ruthie, it was good to see a post from you. I hope everything is better now. Musicalheart@hotmail.com


Tom S, August 26, 2000 - Hi, Was the sex thread thrown into the forum to get the ratings back up after the CBS Survivor series trounced all the media? As in all things, creativity in one of the most personal of all activities (sex) can go a long way in accomplishing a fullfilling experience. bhigheart@hotmail.com
 
Jon's note: survivor series?


Jeff M, August 26, 2000 - Hi, Does anyone know of any special college funding for people with heart disease or for people who are disabled. My financial aid worker told me to research heart disease organizations for additional funding. I thought maybe some of you might have some helpful information for me. Have a nice day and God bless. iowajeff29@aol.com


Jon, August 26, 2000 - Hi everyone, Sorry to be so late today. I decided to just bite down hard and slog through most of the drudge work on the revised Kitchen Corner site. It'll be up in a day or two. Plus, my family's been on the road for a week and got back today. I'm pretty beat from doing more than usual each day for the past week. Jon.


Jon's August 26 reply to Lydia Moore's August 25, 2000 - Hi Lydia, Any time a CHFer gets an infection or a virus, it drains our energy much more than it would a healthy person. Strong drugs to fight the infection don't help our energy level either. You'll get to feeling better, though, honest. It may take a month or so but it'll get better. You just take it easy for now. Jon.


Jon's August 26 reply to Barb L S' August 26, 2000 - Hi Barb, I'm not sure what your exact situation is. People's EF can get better, sometimes drastically better. Sometimes that is accompanied by them feeling much better and other times they don't feel better at all. Sorry to be so vague, but I'm pooped. Jon.


Jon's August 26 reply to Brenda's August 26, 2000 - Hi Brenda, Toprol-XL is a beta-blocker like Coreg. Jon.


Jon, August 27, 2000 - Hi everyone, The Kitchen Corner section is done, I hope. I added a sodium counts page as well. I hope this expands in time to include far more recipes, now that it is better organized. Each recipe page is now printable as is and automatically includes a printable table of the sodium content for that recipe. You can now move from one recipe to the next far more easily as well. However, I gave out before rewriting the recipes listing page so that will have to be a down-the-road thing (I do have the graphics ready, though).
          This was my next to last section to move. (whew!) The heart transplant section will be the last and then I move the Chat page. The transplant coordinator at my local heart transplant center is meeting with me this month to see what might make the transplant pages more usable. I saved the Chat page till last because once it is moved, I plan to host the chats myself at least twice a week so I can answer more questions. Now, I can take awhile to get more doctor listings up on the CHF specialists page as well.
     Tomorrow, I'll be very slow with posts, since I go to see my CHF doc to discuss meds changes I'll be asking him some more questions about Coreg and how we feel versus how our numbers look. I'll let you know what is said, and maybe with a little luck, I can twist his arm to write an article on it, although I think he's gonna be very unhappy with me on this subject. ;-) Jon.


Lydia Moore's August 27 reply to Jon's August 26, 2000 - Thank you Jon for your reply. It just feels better to get things validated sometimes. It gives me hope to know others have experienced these things and that with time, things do get better. I am starting to see the light at the end of the tunnel. I am so blessed with family, children, grandchildren and good friends. When I was younger, I took good health for granted and now I value a moment of feeling good so much more. Thank you for the input and your dedication to this site. Please take care of yourself too. The least we can do is give you a break and let you tend to you and your family's needs.God bless, Lydia. Flanders66288@cs.com


John Len's August 27 reply to Jeanette's August 26, 2000 - Hi Jeanette, Having had 3 sleep studies, I can say "no problem." If you have a professional sleep clinic at your disposal it would be like any other overnight hospital stay. Normally you would go in in the evening with jammies and they will asign you a room. You will prepare for bed but will be wired up with monitoring electrodes to monitor various functions all night, while you sleep. You will wear a mask which will feed air to you during the study and they will vary the pressure from a central panel to ascertain the pressures necessary to control your apnea. The most inhumain insult I had to bear was that they wake you up at about 6:00 AM and usher you out the door without a cup of coffeee! Now, that is cruel and unusual punishment. Go into the forum I listed at the begining of this book. It is a gold mine of information on mask equipment and more. a_lenny6@hotmail.com


David A's August 28 reply to Bobbye's August 24, 2000 - Hi Bobbye, Thanks for the tips regarding travel by airline. It certainly is a good idea to stay away from those salty snacks while on a plane for a long time. That Rome trip sounded like a real ordeal. The travel insurance is a good idea too. I remember years ago you could get it at a number of machines, sponsored by insurance companies, at the airport. Where do you sign up for the travel insurance now days?
     If and when I do travel I plan to take local transportation, once I arrive, to see the sites and of course not over do. Our tentative plans were to fly to Europe but now I think we will stay domestic and fly back East for the Fall colors. Thanks again for the tips. DEZEN@worldnet.att.net


Bobbye H's August 28 reply to Jeff M's August 26, 2000 - Hi Jeff, Contact your local Bureau of Vocational Rehabilitation. Every state has different rules and funding. My oldest son has muscular dystrophy and was fully funded for tuition, room, board and books plus receiving SSI money. He was fully funded until he decided not to go to class - but that's another story! Now we're paying until he can get his grades up and part of his SSI money is going to his tuition. Hopefully if he gets a 2.0, he can get funding again. bobbye@ravenet.com


Barb L S, August 28, 2000 - Hello all, Lydia, I just had to let you know now that your August 23rd post about insomnia, faith and hope has put a smile on my face; A great way to start the day. Your gratitude shines through like a beaming light and I have thought about Christopher Reeve before also. I saw him and his wife on Oprah and it was simply amazing. Thanks for reminding me of everything I do have in my life. I wish the best for you and yours. I needed to read something that positive, especially the first thing in the morning.
     Ruthie, I apologize. When I wrote that it was nice to see you post again, I had just skimmed over the whole page. I'm sorry you're feeling bad and that fluid retention will not just swell up your feet, it downright hurts. I read Jamie's reply about the step stool and I think you should try that too. The step stools that are slanted actually work better because you can elevate your legs and stretch them out at the same time. Also, you can keep your feet up higher. Good luck and I hope you feel better soon.
     Hi Mary H, I have been through almost the same thing but I didn't have the coxsackie virus, my son did. He's only 2½ and it caused him a lot of physical pain. WebMD says it can cause problems or not cause any problems. The best thing I ever did was start having him tested. If you read on, you will understand why. The CHF specialist I had at that time never decided if she would test him so I took him somewhere else fast. I am not a doctor so I don't know if it will eventually effect his heart. He will be tested though, every 6 months. His first round of tests went great, so I try not to worry. My CHF specialist can't even tell us if it will affect his heart for sure. However; I have a friend who had the same thing. She had a heart transplant because of it. I am not saying any of this to frighten you but you did ask if anyone knew of some kind of answer. Our son is much better now, though, and the virus actually took about 14 days to hit and go through his system.
     A special hello to everyone here and I hope God watches over us all today. We really only have today and I'm not wasting days anymore so when I feel like telling someone whom I don't even know that they are special, I will, today. Barb. Musicalheart@hotmail.com

Hedy K's August 28 reply to David A's August 28, 2000 - Hi, I am Walter K's wife and usually post in the caregiver site. I am also a travel agent and am addressing David's comments about travel insurance. Insurance is no longer sold in airports for security reasons. That insurance was life insurance to cover possible airplane crashes. The travel agent or tour operator who arranges your trip can sell you trip cancellation insurance, which covers cancellations due to illness or death involving yourself, immediate family members, and traveling companions. This is the type of insurance Bobbye was referring to. This insurance also covers cancellations due to some other disasters such as your house burning down, jury duty or being stuck in a traffic jam on the way to the airport. If you have CHF, it would be important to have insurance that will cover you for cancelling due to a pre-existing condition. Nowadays you will get that coverage as a rule if you purchase the insurance within one or two weeks of the initial deposit or payment on your trip.
     As a rule, the insurance will also cover the cost of emergency evacuation for you if you get ill and cannot be properly treated where you happen to be. You can also purchase medical coverage for overseas at an additional cost. Medicare does not cover medical cost in foreign countries, but if you have private supplemental coverage, it frequently does. If you have to be treated in a foreign country you generally have to pay for it there, and then submit the receipt to your insurance company when you return (assuming they cover it).
     We have had lots of experiences in seeking medical treatment in foreign countries; Generally they have been very positive. We have received excellent treatment at much less cost than we would have to pay here. Incidentally, when traveling by air you can request low sodium meals on your flights but it must be done at least 24 hour before departure. Walter has not experienced low sodium airline food yet because we have not traveled by air since he got put on this diet. hknoth@magpage.com


Bobbye H's August 28 reply to David A's August 28, 2000 - Hi David, You're welcome. The insurance I usually buy is Travelguard because of their pre-existing coverage. Their web address is www.travelguard.com/. I hope you get to come east and enjoy the colors! bobbye@ravenet.com


Jon, August 28, 2000 - Hi everyone, I'll update you on my doc visit later - too tired right now. Howver, if anyone would like to e-mail me comments - good or bad - about my latest page rewrite, I'd appreciate it. I don't know if I am overdoing it or not. It's the ICDs & More page. A company donated some professional graphics software to me (unexpectedly) and I am struggling to learn it as quickly as possible, so comments and criticism would be appreciated (as well as pointing out my ever present mistakes!). Thanks, Jon.


Jeanette's August 29 reply to John Len's August 27, 2000 - Thanks John, I went to the site and it was very informative, but never gave me the reason why they were going to deprive me of sleep for 24 hours. No one has ever heard of that but that is what they are going to do to me. Again, thanks for the input, anything helps. Jeanette. jeanette841@yahoo.com


Jon's August 29 reply to Jeanette's August 29, 2000 - Hi Jeanette, The fact that no one has heard of this leads me to think you should be questioning your doctor about just why they say they are going to deprive you of that sleep. I would want a very clear explanation of that if it were me, especially since numerous people who have had real sleep studies done never went through it. Jon.


Barb L S' August 29 reply to Mary H's August 22, 2000 - Hi Mary H, I talked to the person I mentioned yesterday, who had coxsackie virus and a transplant. She is having problems with her computer but said she will read your post as soon as she is able. She didn't have the same symptoms. Even though our son was diagnosed by his doctor with "hand, foot and mouth syndrome," which should have been painless, we strongly believe it was another form. He had the white spots in the back of his mouth and a high fever but he was also in a lot of pain in his back. After reading your post again, I double-checked and he also was diagnosed with pneumonia around that time. You are correct about viruses. There will always be a little left in your body and that's why Alex will be tested over and over. He and my daughter also run the risk of inheriting CM because I have it. I hope this helps until she can speak with you. Thanks to anyone who added me to their prayer list. I appreciate it greatly. I did find out this morning that my CHF specialist is still on vacation and I talked with another CHF specialist who covers for him. They are having a nurse come out (standard procedure for fluid retention, no biggie) and I will find out my tests result on Thursday. Everyone, please take care, Barb. Musicalheart@hotmail.com


Cathy P, August 29, 2000 - Hi, It's just me again wondering why no answered my question about yawning. I find it hard to believe I am the only one. I found that by going to Jon's Place is where I find out I am not alone. I have many qustions answered online. Thanks for being here for us all. Be with God, Cathy. cpalmer@megalink.net


Jon's August 29 reply to Cathy P's August 29, 2000 - Hi Cathy, I used the search engine at The Archives and found some posts about chronic yawning starting here. Jon.


Jamie S' August 29 reply to Cathy P's August 29, 2000 - Hi Cathy, Some medicines have yawning as a side effect. I was on Paxil and I yawned a lot. It was rather annoying. Maybe just check your meds and read the side effects. I'm not sure what to do to combat it. Jamie. Jamiedan@optonline.net


Mary H's August 29 reply to Barb L S' August 29, 2000 - Thanks Barb for your insight on coxsackie virus. I believe this is a nasty virus people haven't heard much, if anything about. My son had pain similar to strep throat with his but I had it in my throat all the way to my stomach. This is what they scraped and then dilated my airway. The doctor doesn't seem overly concerned about whether this could be the culprit virus that led to CHF and DCM. I did research on the Net and many friends and family searched libraries and found much information on this virus. It is a dangerous virus that many people have never heard of. "Foot and mouth disease? Isn't that something a cow gets?" This is what everyone said until it went rampant in our local daycare centers.
     I know many of us will never know the actual cause of our heart problems but I am certain this is what attacked my heart. It may have been weakened from other health problems but I really think this virus is the culprit. I talked to the nurse at my cardiologist's office today. She told me that the meds I was taking have nothing to do with any memory loss. Zebeta (bisoprolol) and Mavik (trandolapril) are my 2 main meds. She blamed the constant tiredness on my body just taking time to adjust to the Zebeta. I have been on both for a year and a half. It seems like I should be adjusted by now.
     Also, the shoulder pain and the pain in my left lung have nothing to do with my heart failure. She has had no other patients complain with any such problems. As for tiredness, it just doesn't go along with DCM or CHF. I think I am in the market for a new doctor. Does anyone second this opinion? So I guess if I am having ghost pain and tiredness, so are all of you! I think now I may check into a lung doctor and see if it could be asthma or an infection? Oh by the way Tom, the sex topic brought almost as much excitement and interest as your ant brigade. Thanks for ya'll input. May God bless. Mary. M123_@excite.com


Barb L S' August 29 reply to Kim S' August 25, 2000 - Hi Kim, That's great! I also had been diagnosed with PPCM, now IDCM. I had never heard of this and then when I became able to be actively involved in my own health care, I was really surprised at how many women are sick with PPCM and have gone through this. I found out that this disease is attacking women in this manner with a vengence. I still remember my little pregnancy booklet from the doctor's office, where I was sitting when I consciously thought and said out loud, "Please, I am so healthy!" Well, it's been almost 3 years and I'm still alive and kicking! My EF went up to 47% and I pray it stays that way. I am happy for you. I look forward to the day I can go back to work. In the meantime, I work around and in my home. Right now, I've started to create a web site about missing children, abuse of children and keeping our children safe, safe wherever they go, play and work.
     As far as work, I am speaking of teens who are attempting to build a future with hope, passion and dreams. Babies' and toddlers' play is work! They work so hard. <lol> I feel that talking about a life-changing experience can be nothing but healthy. Talking or typing our words out are very healthy. However I live in Jersey and the support group offered to my family is about 2-3 hours away so that is why I decided to shift the focus off myself. Concentrating on ourselves is unhealthy and my illness does not define or describe me. I am going to ask my fiancé to pick up the magazine and keep doing what you're doing. It sounds like you are also working to live and enjoy life. Good luck.
     Cathy, I just read your post and every time I see that word "yawn" I want to yawn and then I do. <g> I feel it's just part of being a CHFer and I even yawn when following my toddler around the house. Take care, Barb. Musicalheart@hotmail.com


Ernest D's August 29 reply to Phred's August 24, 2000 - Hey Phred, Coreg gave me Bob Dole disease. As I don't take nitro and if I make sure my BP is not too low, I can take Viagra, but you must check with your doctor first. xerez@worldnet.att.net


Paul S, August 29, 2000 - Hi, I was diagnosed with DCM about 5 years ago. Just last week I learned that I probably qualify for a clinical trial involving biventricular pacing. The device will be CONTAK/EASYTRAK system. Before I agree to be a test subject I'd like to know more about trials in Europe or in this country. Naturally I'm concerned about risks versus benefits. Any information will help. pbstephenson@windsong.net


Jon, August 29, 2000 - Hi everyone, I saw my CHF doc yesterday and we had a long talk that went very well. He's used to me being very aggressive about what changes I want in my care yet he manages to persuade me not to do anything too stupid. ;-) To bring everyone back up to speed:
     I believe I may lose my SSD sometime in the near future due to improved "numbers." Unfortunately, I do not feel or function any better, so I need to somehow improve my odds of landing a job of some sort, which will obviously have to be a desk job. My memory loss and muddied mental function since getting CHF may be due to heart failure or it may be due to my meds. I need to know which. If it's the meds, reducing them will help me function better - mentally, at least. He agrees that Coreg (beta-blockers) or Zocor may be culprits in my mental fogginess.
     We're reducing my Coreg dose first, from a high of 50mg twice a day (currently 12.5mg AM and 25mg PM) to 6.25mg twice a day to see if my brain shakes some fog. If it does, I'll stay on the low dose. If not, I'll increase it again. He says that mortality benefit from Coreg comes in "levels," from 6.25mg (very small benefit), 12.5mg twice a day (some definite benefit), to 25 to 50mg twice a day (definite benefit). He refuses to let me stop taking it altogether and he's cooperating with me so I'm going along with him too. I've now reduced my Coreg dose to 12.5mg twice a day and in 2 weeks will go to 6.25mg twice a day to see how it goes.
     I am also re-starting Aldactone at 12.5mg per day and if breast tenderness starts again, I'll stop taking it immediately - more compromise. I am stopping my potassium as long as my blood levels look okay. My Lasix is down to 40mg daily and although he says I am slightly "wet," he wants to keep the dose right there since I still have a problem with lightheadedness and drying me out further would make it worse. I'll be stopping Zocor after we determine if Coreg is reducing my mental function or not, since he doesn't believe I am at risk for atherosclerosis right now and I agree.
     By the way, Mary, you definitely need a new doctor and some better educated nurses. Jon.


Ben B's August 30 reply to Mary H's August 29, 2000 - Hi all, I think it is necessary to point out, before everybody freaks out about this coxsackie virus, that this is an extremely common virus, affecting around 20 million people each year, mainly toddlers. It can cause strep throat symptoms, or the "foot and mouth disease" but only very, very rarely causes the myocarditis that can lead to heart failure. Also, there are many differnet mutations of the virus. It is not a pleasant thing to get but although people need to be careful, CHF from coxsackie is extremely rare. I only point this out so parents with small children who have had the virus and may read this don't go into panic mode. It is almost always a quickly passing viral condition. In your case, it may have caused your CHF, although I'm a little at a loss as to what difference it makes. bdbrinkman@juno.com


Krista's August 30 reply to Paul S' August 29, 2000 - Hi Paul, I was diagnosed with CHF just last December and have had a difficult time getting it under control until recently. In June I was at my worst, with my liver and kidneys retaining water and my whole body dysfunctioning due to CHF. My CHF specialist and EP suggested a biventricular pacemaker, which was implanted shortly after. I was not able to participate in the study because my condition was so bad and they did not want to risk my not being paced (there's a 50/50 chance of being paced in the study), so they gave me an "off-label" device, which is a device composed of approved parts which have been manuevered to provide biventricular pacing.
     Since then, I have have felt 100% better. I had been at the point where simple activities like getting dressed and picking up my cat would wear me out, and I can now do most activities with no problems. I have had virtually no water retention and feel so much better. The device I received is a Medtronic device but I am not familiar with the CONTAK/EASYTRAK system. A recent study done in Europe may give you some of the information you are searching for. In addition, the Medtronic and Guidant web sites may have more information about these devices. As far as I know, the risks are relatively low. Implantation can be done as an outpatient procedure with just an overnight stay. The difficult part comes in placing the third lead on the left ventricle, which can be difficult. In addition, my pacemaker is coupled with a defibrillator, which can be a lifesaver. Mine shocked me about 3 weeks after implant. Best of luck to you, Krista. itkristalosey@earthlink.net


Barbara L's August 30 reply to Barb L S' August 26, 2000 - Hi, I'm not sure if this is right but here goes: your post to Brenda H talked about being seen at Columbia. Is that Columbia Presbyterian? If so, I am seen there by a Dr. H. Katz. You sounded very pleased with your doctor. I am in in the process of looking for a new cardilogist. Do you think that surgeon at Columbia is the way to go? Have you any idea how many echos in a year need to be taken to have EF checked? Thank you for any information you can share. Sincerely, Barbara L. HappyEloise@aol.com


Jeanette's August 30 reply to Jon's August 29, 2000 - Hi, I found out why they are going to deprive me of sleep for the 24 hours. They want to make sure I am absolutely exhausted so I can sleep all night and they can get an accurate reading. What I don't understand is how they are going to do this with my DCM? You would think that would put a lot of stress on my heart to keep awake that long just to get a good sleep. I don't know when I am going to have this done. I am waiting on the doctor to call with an appointment. I will definitely call and find out what is going on when this happens. I just want info beforehand so I know what questions to ask. Thanks for all the input. I really, really appreciated this. Jeanette. jeanette841@yahoo.com


Jon's August 30 reply to Jeanette's August 30, 2000 - Hi Jeanette, At the risk of dragging this on further than you want, I feel obligated to say that I have serious doubts about this study method. What they should be trying to measure is a typical night's sleep for you, so they know what your real sleep is like. By artificially changing your sleep/wake pattern to exhaust you, they are guaranteeing that the result will not be typical at all. I'd get a second opinion about all this myself. I'll let it drop - just had to say that. Jon.


Tom B's August 30 reply to Jon's August 29, 2000 - Hi Jon, Thanks for the info about your last doctor visit. Some of it is very relevent to me. But on another matter - your returning to work. I presume you mean work you actually get paid for because this site is certainly work, so why not get paid for this site? I simply can't believe there are not entities (American Heart Association, etc.) that couldn't be approached to sponsor this site; not commerically, just as underwriters. The work you do here is so good that the foundation for it ought to be more formalized.
     If and when you are inclined to pursue this, man oh man, could you count on the support of those of us who use it daily. Just let us know who you have in your gunsights, give us some contact information and we'll pester the snot out of them until they surrender. If you nailed down 3 or 4 such organizations for $25,000 each (or whatever is the right amount to employ you) I think you might be successful. Whataya think? tbehan@earthlink.net


Jon's August 30 reply to Tom B's August 30, 2000 - Hi Tom, Obviously I would prefer to make this site my work. First though, a correction: this site as I do it now really isn't work in the job sense, for one very clear reason - I do it whenever I am up to it, in the amount that I am up to it that moment. Although I do the message boards almost every day, often weeks go by without any updates to anything else at all. I work in the middle of the night one day and at noon the next and not at all the next. This does not appeal to employers, I assure you. Deadlines are out of the question.
     Nutricia (MyoVive's makers) bought me my computer and all you guys loaded it with the software that runs this site top to bottom. The outpouring of support from all you readers and friends for software, hardware upgrades, and booting Comp USA in the rear to get my pooter fixed was amazing to me. Another company just donated Photoshop 5.5 to me for graphics work on the site. So some people see it as worth money. believe me, I've thought about it a lot. Here's a few thoughts I've had on the subject:

Okay, I've been negative now. On the upside, I'd love to make it work. I just don't have a clue how to start, much less carry through. You have to remember that I'm an ex-cabinetmaker and knifegrinder, not a business man. If any of you business people or ex-business people have suggestions, ideas, comments or whatever, please e-mail me or post here, whatever you are comfortable with. I am open to all ideas so that this site can prosper and I don't have to go on a bread line. ;-) I'm stubborn, but I am also open to making changes that are really necessary to keep this place going strong. Jon.


Mary H's August 30 reply to Ben B's August 30, 2000 - Hi Ben, Thanks for your insight on coxsackie virus. Everyone copes with their heart problems on a slightly different note. My therapy for myself was to fulfill my concern about the virus they told me caused my problems. My mind is at ease a little in my belief that this did cause my DCM. How many parents with toddlers are actually told that this virus could - evenly rarely - lead to a heart problem? Mary. M123_@excite.com


Frank S' August 30 reply to Jon's August 30, 2000 - Hi Jon, Please don't sell your expertise short. I sent you a copy of the letter which I wrote to UCSD Medical Center extolling you and your site's virtues and benefits to those who have cardiomyopathy and CHF. To add to what Tom said, I would think that most of these medical centers where CHFers go to be treated would welcome the opportunity to be listed on your site, and even pay a modest amount to have a link from your site to their facilities. Tell your buddy Dr. Silver and the people at Myovive and others what you need to accomplish, to keep things going. You could also give your darling daughter some pocket money to do some of the tedious work and heavy lifting. Later, Frank. marquasmith@lycos.com


Jon's August 30 reply to Frank S' August 30, 2000 - Hiya Frank, Thanks for the nice words. :-) However, it's sort of a quid pro quo on the web. If I want them to link to me I have to link to them too, and no money ever passes hands. It's just the way things go. Still, maybe they would have an idea on another course I could pursue. My daughter is buried in senior year schoolwork. We have broken our bank for 13 years to send her to an excellent private school and she takes a very heavy course load. No help there, I'm afraid. She can't even keep her own web site up. That's why I haven't made the nice link to the other message board yet, although maybe you noticed the note when you posted. <g> As for Marc Silver, I'd say that by listing me on multiple pages in a best seller, he's probably done his part. <lol> Jon.


Tom S' August 30 reply to Jon's August 30, 2000 - Hi, While it would be nice to see you rewarded financially for all your efforts I have to agree with you that the "purity" of this site gives it a lot more credibility than others I have visited. I cringed a little bit when you did some promotion on behalf of the supplement folks but fully understand that without a decent computer there would be no place to call this wonderful web address home. I also question how long it would be before SSD takes a look at your efforts and says that you obviously are capable of working because you run this website and thus would face the possibility of SSD running dry. Like you, I can "work" for minutes, sometimes an hour, sometimes 2 hours in front of a computer. I do it on a volunteer basis for my church and other charitable organizations, but I know I could not do it as a part or full-time sustained job. The question is, would SSD see it that way.
     It's a tough position we are all in, especially those of us who really suffer the ravages of heart disease and would be living under a bridge if it wasn't for the federal SSD safety net. We would all love nothing better to resume what we were doing when we were hit with this condition but realistically, barring divine intervention, we will live with this condition until the day our last breath leaves us. Our condition seriously limits our activities and anyone who fights it and does not follow the limited activity guidelines (as we have learned with the dwindling numbers on this forum) is only hastening the day of their death. I for one am trying to stretch that inevitable day to its outside limits for the sake of my wonderful wife and children, and I don't believe any amount of money could sway me from that solitary goal. bhigheart@hotmail.com


Jon's August 30 reply to Tom S' August 30, 2000 - Hi Tom, I'm not too worried about SSD saying running this site constitutes an ability to work, and I never have been. I have almost no professional quality web skills at all and no way to learn any, despite what people think when visiting here. They simply don't know the requirements for professional web authoring these days. It's the rise in my test numbers - not accompanied by a rise in my ability to actually function - that leads me to believe my SSD days are numbered. I notified SSA when my numbers went up and that may speed up a review but it was my obligation to so do (legally).
     I must have given the wrong impression about me and MyoVive, so I'll try to clarify. I don't support it because Nutricia bought me a computer. I support it because I think it has helped me personally, after taking it for about 6 months. I also think that its success will largely determine whether any other companies attempt to produce similar products. I think we all want that to happen so that eventually health insurers will pay for a specific "CHF supplement" and we can quit breaking the bank to buy our own. Stephan from Nutricia wrote me a binding note to go with the check at my request, clearly stating that I could spend the money he sent me any way I saw fit as long as it went to maintaining my web site in some fashion, no strings attached. I added the note about my funding from them to my MyoVive page so that no one would think I was hiding anything. That was my idea. I wanted to be upfront about it, is all.
     I'm not looking to make money off my web site and never have, as long as SSD or some other payment makes ends meet for my family. This is only an issue if I lose all income to my family from SSD and my Disability pension (from my union). So a need to earn money may never happen if I pass my first SSD review. I am somewhat doubtful about that though, and must plan accordingly. I would rather make money off this site than try to flip burgers or stuff envelopes. Given that I have 4 years of schooling invested in a field I can no longer handle, those are my most likely options without Disability. Then again, the biggest kid on the block (Jesus) is my best friend so I know I'll do alright one way or another. ;-) Jon.


Barbara L, August 30, 2000 - Hi, Has anyone had their breastbone raised or protruding slightly? If so, do you know why this happens? Is this common to all CHF and DCM people? Happy Eloise@aol.com
 
Jon's note: Barbara, have you lost weight lately?


Madelyn J's August 30 reply to Mary H's August 29, 2000 - Hi Mary, I complained about constant acheyness in my left shoulder and arm, with a more acute recurring pain in the left side of my chest, for the first 2 years after my diagnosis. I couldn't hang a purse on that shoulder or use that arm for carrying much. Some doctors said it couldn't possibly be related to my heart because my arteries are clean and I have no congestion. Others admitted that a certain percentage of CHF patients have atypical upper body pain. The crazy part for me was that the pain stopped when I stopped taking amiodarone temporarily. The pain came back when I resumed amiodarone. Then when I added Coreg, the pain gradually faded to an occasional thing. I know this doesn't follow a known pattern but I've had problems with being sensitive to known side effects of medicines. I believe the pain is a reaction in my case, not a warning sign from my heart. I hope this helps. madelyn29@juno.com


John Len's August 30 reply to Jeanette's August 29, 2000 - Hi Jeanette, My first sleep study was done at a VA hospital sleep lab. I was instructed to stay awake all night, report in at 10:00 AM and lay on this slab in the middle of the lab (a la Frankenstein's Monster - with the lights on and windows streaming light). I was hooked up to all the gear and instructed to sleep on command - yeah, right. I was also told to hurry up and sleep as I only had 4 hours for the test since they had another testee coming in later. Needless to say, I flunked the test. I never could sleep on command. The report was, I was uncooperative and never would go to sleep. It was a few years later that I had a decent test in a real lab and finally got the machine I needed. John. a_lenny6@hotmail.com


Linda J, August 30, 2000 - Hi Jon, I can't commend you enough for this wonderful site and the effort you put into it. You know that I have really enjoyed this site and have learned a lot from it however I am going to have to resign from it. I will keep everyone in my prayers. I spent a week in the hospital and had all kinds of tests done and they found that I do not have CHF. SI was misdiagnosed by 2 heart specialist 3 years ago and the medicine was about to kill me. I have a severe case of asthma instead. Keep up the good work and God bless all. jonesgen@aol.com


Jon's August 30 reply to Linda J's August 30, 2000 - Hi Linda, I'm sorry to see you go but even sorrier that you have been led down the wrong road for so long. I hope your new treatment helps you feel a lot better quickly! You are always welcome here. Jon.


Barb L S, August 30, 2000 - Hi everyone, Mary, It's a little harder relaying info third party. I need to say that I do agree with Ben. The coxsackie virus I had never, ever heard of and even thought when my fiancé first told me that our son had it, thought he was joking because that's his nature. I do understand fear of the unknown though and if you need to talk about it more, maybe we can e-mail. I think maybe also you need to get a different doctor, as Jon noted. I did when mine wasn't helping me. Good luck and thanks for being here for me also.
     Hi Ben, I do agree with you but it helped me a great deal when people understood that this was my baby son and my fear of the unknown. For anyone who reads posts about this coxsackie virus, I would advise that you go a reputable site such as WebMD. I am not a doctor. The only question I do not like is the one not asked. I wish you well and please take care.
     Hi Barbara L, you are absolutely right. I did go to Columbia and felt I had been happy there. However I was just hanging in with my doctor more or less. This downslide happened over a period of time but I was afraid to change doctors. We had traveled 2 to 3 hours for each visit that lasted about 20 minutes. It got to the point that I had to play a guessing game, even when it concerned my Lasix. I very rarely go into all my emotions when speaking with a CHF specialist. These are doctors I trust to save my life and it can be very intimidating. I still feel that Dr. Mancini is a good doctor for anyone who wants to go there. I've heard that Dr. Katz is also world-reknowned. However our questions were not being answered so we decided to take this chance and I am so grateful that I did. I feel better because my meds were so messed up. I can't tell you where to go. I believe that's a very personal decision. As far as echos, that's usually up to the CHF specialist you choose. I am not a doctor and don't know too much about this stuff either, just my own experiences I can share. Take care.
     Hi Jon, I also agree with Tom B. I haven't been here long but my family has. There is no better place than this for CHFers. There is not just support but tons of knowledge that personally I never even knew existed. Even though your numbers improved, which has happened with me, it does not match how you feel. Thank you for this site and take care. Barb. Alikeys@hotmail.com Everyone please note new e-mail address.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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